≡ Menu

New Understanding of the Causes of Endometriosis Offers Hope for New Treatment

New research reveals endometriosis is a disorder of estrogen production on a cellular level. Endometriosis is caused by the presence of endometriosis implants, cells outside the uterus that normally live inside the uterus (the endometrium).

Evolution of the understanding of endometriosis offers hope for new treatments such as estrogen blockers and progesterone blockers.

In women with endometriosis, the processing of estrogen is abnormal, both within the cells lining the uterus (the endometrium), and in endometriosis implants outside the uterus.

Endometriosis implants have an abnormal amount of an enzyme called “aromatase”. This enzyme converts estrogen-precursor molecules to estrogen. Endometriosis implants also have high levels of estrogen receptors. Therefore endometriosis implants can both synthesize estrogen independent of the ovarian hormones; and they are more sensitive to estrogen.

Endometriosis implants are thus “self-perpetuating”. Endometriosis located outside the uterus can re-generate itself and spread through self-stimulation, whether or not the uterus and ovaries are present. This explains why some women who have hysterectomy for endometriosis have recurrent pain after total hysterectomy. Hysterectomy and oophorectomy (removal of ovaries) “debulks” endometriosis tissue present in the uterus and ovaries, but it does not remove endometriosis implants present outside the uterus.

Endometriosis implants outside the uterus and the endometrium produce high levels of inflammatory chemicals called “cytokines” and “prostaglandins”. By releasing prostaglandins and cytokines, molecules responsible for cramping during normal periods, endometriosis can inflame the nearby tissues and nerves, resulting in chronic pain at any time of the menstrual cycle.

“Location, Location, Location”: Endometriosis Resembles Real Estate

Location of endometriosis implants is key to their symptoms and other clinical manifestations.

Endometriosis is usually found in three places:

  • the tissue lining the pelvis and ligaments that support the uterus (pelvic peritoneum, uterosacral ligaments)
  • the ovary (a collection of endometriosis cells and fluid called an “endometrioma”)
  • in the wall between the vagina and rectum (recto-vaginal septum)

Although these are the common locations of endometriosis can occur almost anywhere in the body. I have seen endometriosis on the intestines, and even had a patient with endometriosis in her lungs. Every time she menstruated she coughed up blood!

The location of endometriosis implants explain why some people with minimal endometriosis can have a lot of pain; while others with large cystic endometriosis can have no pain. For example, you can have a few small endometriosis implants on or near the pelvic nerves and have a great deal of pain; while another person can have a large cyst of endometriosis on the ovary and have no pain. The ovary has a different nerve supply and can apparently “tolerate” bulkier endometriosis.

Endometriosis that grows on and into the pelvic nerves can cause referred pain anywhere along the path the nerve innervates. For example, endometriosis on or near the obturator nerve, which supplies the inner thigh, can cause pain down the leg, and even in the groin/labial area. Endometriosis along the pudendal nerve, which innervates the lower vagina and external female genitalia, can cause pain anywhere along that nerve’s distribution. About 5-10 percent of women have symptomatic endometriosis, the most common cause of chronic pelvic pain.

Endometriosis in the ligaments supporting the uterus can be particularly troublesome because it can infiltrate the pelvic nerves, in close proximity.

Traditional Treatment for Endometriosis Focused on Suppressing the Growth of Endometriosis Implants

The main-stays of endometriosis treatment have been:

  • suppression of menses with progesterone
  • use of anti-inflammatory medications (e.g. ibuprofen) to reduce pain
  • laparoscopic removal of endometriosis implants
  • Use of Lupron (suppresses ovarian hormone production) to create a short-term “menopause” and withdraw hormonal support to endometriosis implants
  • removal of uterus, tubes, and ovaries (total hysterectomy with bilateral salpingoophorectomy)

While each of these has their place in treating endometriosis, none of these is completely effective at eradicating endometriosis. (See the related post, Pros and Cons of “Traditional” Treatment for Endometriosis–not yet an active link).

In fact, endometriosis is now seen as a chronic disease. The goal of endometriosis treatment should be to control manifestation and progression of the disease, preferably without resorting to the extreme of hysterectomy.

For more information on managing endometriosis, see these posts:

Exciting News for Endometriosis: Aromatase Inhibitors and Ablation

Pros and Cons of “Traditional” Treatment for Endometriosis (not yet an active link)

Questions:

  • Do you have endometriosis?
  • What treatments have worked for you, including “traditional” (allopathic)and complementary/alternative medicine?
  • Have you tried yoga for treatment of chronic pain? If so, what has your experience been?
Be Sociable, Share!

{ 53 comments… add one }

  • Shannon June 30, 2009, 4:14 pm

    I have endometriosis and have undergone 4 laparoscopies to remove endometriosis implants and adhesions. Recently, I have started using progesterone cream from a compound pharmacy. The physician who prescribed it told me that my body would take some time to adjust, however I am on month 4 and every time I apply the cream I feel extreme pelvic pain. I use the cream primarily on cycle days 12 – 24. These 12 days are plagued with pain and tenderness. I know I have adhesions (as seen via transvaginal ultrasound by my RE) and it seems the progesterone cream makes the endo pain worse. Everything I’ve read however points to the contrary; progesterone cream improves endo symptoms. Can you explain this? Are my estrogen receptors still adjusting after 4 months of treatment? I appreciate your response.

    • Shelley Binkley July 1, 2009, 5:19 am

      Hi Shannon,
      Endometriosis implants are also known to process progesterone abnormally. However, estrogen and progesterone are produced by the body through similar metabolic pathways. While abnormal estrogen metabolism has been identified as a primary reason contributing to development of endometriosis, it is likely that in a percentage of people with endometriosis, the progesterone metabolism is the dominant abnormal process. People with endometriosis may actually have both, but one may manifest itself more than the other. For example, with your endometriosis implants you may have a progesterone dominant process. So taking progesterone may actually aggravate your endometriosis, instead of alleviate it. In fact, from what you’re describing, that is a likely possibility. You may want to consider discontinuing the progesterone and observe if your symptoms change. If you do this, let your doctor know; and it helps to track your symptoms using a daily diary, even if it’s a one-word entry. This allows you to retrospectively evaluate your response to a treatment in an objective manner.
      You may benefit from treatment with a progesterone blocker such as mifepristone. Mifepristone is a SPRM (selective progesterone receptor modulator). It blocks the action of progesterone. It has been used in experimental trials to relieve or eliminate endometriosis symptoms. The dosing for endometriosis is 5-10 mg daily for 90 days. It can be extended to 180 days if it’s resulting in significant benefit; and in some people it may provide symptom relief for several years. Side effects of mifepristone would need to be discussed with your physician. I wish you the best and hope this helps. Thank you for reading the blog and sharing your experience.

  • Shannon July 1, 2009, 10:21 am

    Shelley,
    Thank you for your timely response. I didn’t know that endometriosis implants can process progesterone abnormally. I will definitely discuss this with my doctor.
    The reason I am using progesterone cream to begin with is that my progesterone levels (obtained via saliva testing) are extremely low. According to the endocrinologist I am seeing, my levels should be approximately 300 PG/ML and mine are 37 PG/ML. I was having symptoms of estrogen dominance, even though my estrogen levels are normal. The progesterone cream definitely helps with the hot flashes, mood swings, etc. of estrogen dominance, but I feel that my endometriosis pain is worse. Is this a case of choosing the lesser of two evils? If I get another laparoscopy (which I plan to do soon) to remove the adhesions and endo that I have, will the progesterone cream aggravate the endo and make it return faster? I know these questions may be hard to answer. I appreciate your time and knowledge.

    Best regards,
    Shannon

  • Nicole July 17, 2009, 3:11 am

    I have endo and have tried a number of treatments: continuous birth control (no break in between), 3 laps, two rounds of Lupron…the first round with add back and the second round without add back, and currently have a Mirena. My endo doc has said that I am not a good candidate for further laps (another doc performed each before I switched to an endo guy) as I do not have a good result and that it will only ad to the adhesions and scarring which he believes is adding to the extreme pain that I have been having. I had the Mirena fitted in Februaru 2008, the pain subsided a little about 4-6 months ago but in the past 2 months has become excruciating. I have an appointment with my endo doc July 28 and am looking for ANY other options as it is becoming quite unbearable. I have done a lot of research over the years and know that a hysterectomy may not be the cure. Id there anything else outside of the yoga etc. that I could try?

    Thanks so much,

    Nicole

  • Laura October 8, 2009, 6:24 pm

    I am having pain in the groin/liabal area along with leg pain. I currently have Mirena but am now having this pain worse than prior to the insertion of the Mirena. My doctor has placed me on anti-inflammatory for the pain. He has not tested me for endometriosis but has stated there may be a possibility I do have it. I believe there may be a good chance that I have it. Is this a normal are to be affected with endometriosis? The pain can be unbearable at times with no relief from pain medications. Do you suggest I continue to follow his orders and hope this subsides with more time?

    • Shelley Binkley October 11, 2009, 4:59 pm

      I can’t make recommendations specific to your situation without doing a full history and physical. However, Mirena is a good option for some women with endometriosis. Other options include Lupron, aromatase inhibitors, and laparoscopy (surgical evaluation for diagnosis and treatment of pelvic pain). People who don’t respond to one treatment for endometriosis will often respond to another. Some women seem to have “progesterone dominant” endometriosis, and respond to Mirena well. However, other women seem to have “estrogen dominant” endometriosis; and they respond better to suppression of estrogen pathways with either Lupron or aromatase inhibitors. There is some scientific evidence to support this: biopsies of endometriosis implants from women with “estrogen dominant” endometriosis seem to have greater capacity to produce and respond to estrogen; while the complement is true in women with “progesterone dominant” endometriosis. If you’re not responding to a treatment within 3 months of using it, it may be beneficial to evaluate other options.

  • sally November 7, 2009, 4:12 pm

    I am just finishing 6 months of Synarel and am scared to stop. For the first time in 20 years I have had no pain. I have stage IV endo in usual placves and on bowel nd diaphragm. Any ideas what I can take after Synarel? I love it. I had hot flushes, tiredness and a bit of nausea but no pain, clear skin and lost weight. Want to take it for ever!

  • LuAnne March 30, 2010, 4:49 am

    I am 51 and had a hysterctomy and both ovaries removed 8 years ago. The surgery took 6 hours with several surgeons working to remove all the endo they could find. I started having pain about a year and a half ago saw several Drs. told them it felt like endo they told me not posssible. Six weeks ago I had severe abdominal pain for hours then I had a seizure. My husband called 911, when the paramedics arrived my blood pressure was 50/26. A CAT scan revealed a large abdominal mass (12x7x5)cm. It had been bleeding and this caused the pain and loss of conciousness. After several inconclusive biopsys a lap revealed that the large mass and several smaller ones are endo. The large mass is behind my stomach and surrounded by scar tissue. I have been in pain daily since this happened. I would like to have it surgically removed, but the GI Dr. says it is too risky. The Gyno Dr. says she can’t do surgery on that area. Waiting to see if my health insurance will approve Aromatase as a treatment. I am concerned about bleeding out again, and wondering how effective the Aromatase will be in shrinking the mass and helping to get rid of the pain.

  • Dana September 10, 2010, 4:29 pm

    Discovered aggressive endo at age 14 with two orange size endo cysts on ovaries and endo in various locations within abdominal cavity. Treatment included lap and birth control pills. Still on the pill 20 years later. This seems to have controlled the situation but I don’t live near my original doctor-he was a cutting edge endo doc at the time- Never had children. I’m very concerned about still being on the pill continuously and I’m eagerly awaiting any new treatments. I seem to do ok with “YAZ” although we are thinking I have chronic pancreatitis because of it. Not sure what to do.

  • ann November 19, 2010, 8:36 pm

    recently told I have endometriosis. My question is that I am 49 years old and I imagine close to going into menopause. I have two sisters that already in that stage of their lives and they both went into it early. both with high blood pressure and either diabetic or osteopenia. that really concerns me. on all the stuff I read there are benefits to going into menopause naturally and I dont want to rush the process and end up with some of the problems they are having. one sister had a hsterectomy at 40 and the other had thyroid problems and went into it by mid 40. any thoughts.

    • Dr. Shelley Binkley, MD December 16, 2013, 7:38 am

      Hi Ann,
      Most, but not all, endometriosis resolves after menopoause.
      How did it go?
      Thank you for reading the blog and commenting.
      -Dr. B

  • Sherry December 11, 2010, 12:54 pm

    Dana, have you been on continuous bc pills without a breakthrough bleed? I am diagnosed with stage 4 endo as well and am a bad case of the disease – 2 laps for large endometriomas on both ovaries with my left ovary stuck to the bowel and uterus. After a few months on Zoladex (GnRH agonist), I am to be on continuous bc pills back-to-back packs with no breakthrough bleed. Any idea how safe must this be?

    This is a very interesting and useful website for us endometriosis sufferers. Dr Shelly, are the aromatase inhibitors already available for treatment? Thanks for all your help.

    • Shelley Binkley April 4, 2011, 1:48 pm

      AI’s can be used “off label” for treatment of endometriosis. In other words, they are FDA approved for one diagnosis (breast cancer), but can be used for other situations if the use is appropriate and scientifically based.

  • diana January 6, 2011, 6:56 am

    Dear friend,

    My name is Diana….I have already been on this site, I am back.
    I had 2 laparoscopic surgeries during last 5 years. I thought that I can beat the illness. Last month I tried FIV. Monday we got the result. Negative. No change. I thought I can win.
    It was our last chance. I don’t know what to do know. I have a cyst o 6 cm. I should operate, but than I’ll never have babies again. And endometriosis can return, like before.
    It is a hopples situation; I am so tired, because of pain, lack of hope, financial issues (in Romania FIV cost almost 5.000 euro.)
    I don’t know what else to do, now one knows any treatment, I have tried everything: surgery, medicine- injection and FIV. Nothing works.
    Thanks for reading my story.
    Wish you all a great life!

  • Eve April 12, 2011, 3:20 am

    I had endo for many years up until twelve years ago when I had laser treatment and then very miraculously fell pregnant with my daughter. She is nearly eleven now, and the endo is back. For the last three years I have suffered with pain in my lower rib region, and have been hospitalised three times. I had thirteen attacks of this abdominal pain always during a period, and was diagnosed with idiopathic pancreatitis. Now there has been a question raised amongst my consultants that the endo could be causing the pancreatitis.. ( I have had scans and the docs say that my pancreas looks perfectly normal but the amalayse count after each attack is high). Is it possible that the endo is causing the pancreatitis? and if so what is the best treatment to erradicate the cause? This is really affecting my home and work life as I am almost totally incapacitated for maybe a week or more every month.. thanks for any comments :)

  • liz April 19, 2011, 1:24 pm

    Hi everyone i need your suggestions this is my endo story. I am 19 right now and was diagnosed with endo at 11. I have had 2 surgeries for it in the past. i have tryed everything out there to start with birth control taken normally, birth control skipping placevos,and then taking the first three placevos and then another month only 2.i have tryed every kind of birth control on the market. when i was younger my periods were HORRIBLE i would where childs diapers as pads and would go through about 12-14 a day. Then i was put on a pill that quit your period with birth control. then i went to see this one of a kind specialist who put me on lupron then once it wore off my period started. went back on lupron and birth control at the same time so that when lupron quit birth control would work. nope didnt work. now im back on lupron for the last time with another birth control but i am not thinking it will work. along with it all i have severe back pain from endo i am on anti depressants for the back which helped but now quit so they up the dose and is ok but not working as well as hoped. Also i have interstital cystitis. please help me with all of this i am young and want to have kids someday!

    thanks so much,
    liz

  • Theresa April 28, 2011, 11:10 am

    Hello,

    I am 5 weeks after laparoscopy when a endometriosis (left ovarian, vesica etc.) and adenomyosis where operated. The uterus was very damaged after this so they had to do a complicated reconstruction of it. Some rest of adenomyosis had to be left to save the uterus.
    My history: I suffered from a more and more horrible pains every months when it comes, even before and after for last three years. I passed 2 IVF, each time ended by a misscarriage in 5 or 6th week. When repeating to my doctors about my pains, they only continued to give me new and new pills. When I started to talk them about endometriosis which I found thanks to my friends and internet, they said: no, we think it is not your case. The suffering was so terrible (when I wish to die, really), I decided to pass IRM and laparoscopy. The IRM discovered it imediately, even if not everywhere as the laparoscopy. I found also that we can pass tumor marker 125, which in my case was very very high. No a week after my laparoscopy I started to take the contraception without the break for 6 months. I will pass a second look hysteroscopy and laparoscopy in a few months. The pregnancy is a big question, especially because of the state of the uterus. I am already 37.
    I am taking vegetal enzymes (Apo-Curenzym), stoped to eat meat, started to eat a lot of veget.&fruits atc…
    Please could you tell me more about Aromatase? As the link is still not active. And or other more possible treatment. Thank you!

    • Shelley Binkley April 30, 2011, 9:11 am

      Hi, I’m sorry the link is broken. I’ll try to get it fixed quickly. Aromatase inhibitors (e.g. anastrazole) block estrogen production at the cellular level. By blocking estrogen production within endometriosis implants, they may have value in reducing the size, number, and overall burden of the implants (e.g. production of inflammatory molecules). Some studies have shown 30-50% reductions in endometriosis symptoms with a 90-day trial of daily anastrazole. There are also more recent studies emerging on the use of progesterone-blocking chemicals to treat endometriosis, fibroids, and adenomyosis. I will try to put this information on the site as soon as I have the time to get it together and assemble it inot a coherent post. Thank you very much for your comment and for reading the blog. -SB

  • Michelle November 8, 2011, 4:13 pm

    so i have endo and i have under gone 4 cleanings of the endo and on off the lupron for several years with add back, now i’m undering going lupron therapy again with the idu, i was told by my dr. just a day ago that he sees no change and in fact that it has grown back faster, and that he says a romoving everything from uterus and ovaries is the next step. I’m on 22 and not the decision i wanna make, i am seeking any other option than that, if anyone knows any other treatment that has been knowen to stop or slow it would be great. Please help, not a choice i wanna make right a the moment.

    • Shelley Binkley December 16, 2013, 7:31 am

      Hi Michelle,
      Some endometriosis can be very resistant to any type of treatment.
      Thank you for reading the blog and sharing your experience.
      -Dr. B

  • Kim November 20, 2011, 10:06 pm

    My doctor suspects that I may have endometriosis. First we tried the mini pill for about 9 months, then we just recently switched to Depo provera. My doctor mentioned trying either Lupron, or laparoscopic surgery next. So far, I have had irregular bleeding with both the mini pill and the Depo. I also have lots of abdominal pain though out the month and IBS. My pain doesn’t seem to be over the uterus/ovaries (unless I have my period)- it feels like it is coming from the intestines. Almost like a constant sharp pain, although it gets worse when I have bleeding. Is it possible that this is referred pain from endometriosis?
    I would hate to have surgery only to find out it is something else. If I had endometriosis on the intestines is that something that the doctor would be able to find during laparoscopic surgery? FYI my GI doctor hasn’t found anything to explain it, and said I should see my GYNO.

    Thank you so much for this site. Your explanations are really detailed and helpful compared to the other articles I’ve read.

    • Shelley Binkley December 16, 2013, 7:20 am

      Hi Kim,

      Yes the Ob Gyn is the right doctor to address this.
      Thank you for reading the blog and sharing your experience.

      -Dr. B

  • Tracy February 24, 2012, 11:02 am

    I have a full hysterectomy 9 years ago. I am 48 years old now. Prior to my hysterectomy, I had lap surgery 3 times to remove endo and each time I was at stage 4 and bowel was involved. I feel as though the endo is back again and the bowel, bladder, and right leg are involved. Are there any other options aside from surgery?

    • Shelley Binkley December 15, 2013, 7:02 am

      Hi Tracy,

      Yes, there are other options. I suggest you see your Ob Gyn to discuss them.

      Thank you for reading the blog and commenting.

      -Dr. B

  • Sharon June 2, 2012, 7:50 pm

    I have recently had a total Hysterectomy because ongoing Bleeding issues. I am 47 years old. I have a history of Fibroids and Endometrioses. My Doctor has put me on Estogen and Progesterone. I’m uncertain as to what I should DO? He explained that Estrogen will help with not being “Slammed” into Menopause and the progesterone will offset any further growth of endo. that may be traces of it still in the abdominal cavity??? Any input would really be helpful. Thanks.

    • Shelley Binkley December 16, 2013, 7:04 am

      Hi Sharon,

      Hormones do help with post meno pausal symptoms. Their effect on endometriosis can vary. I recommend you talk to your Ob Gyn.

      Thank you for reading the blog and commenting.

      -Dr. B

  • jessica June 10, 2012, 6:22 am

    I have pcos and had a laparoscopy to check for endo and to my surprise because of my symptoms I didn’t have it. The leg pain j experience every month had my obgyn convinced until he went in and seen only scar tissue but my symptoms r all still the same. No periods at all…extreme leg pain 3 days before supposed period and three day’s before supposed ovulation time( like clock work) …infertility ect. My doctor now thinks I could have endo in the nerves. I have never heard of this. He didn’t offer any kind of treatments so I am assuming there r
    none. Were trying to get pregnant and have been for 3 yrs. What can
    I expect from this. And what is normally done for this condition?

    j expect

    • Shelley Binkley December 16, 2013, 7:11 am

      Hi Jessica,

      Treatment of endometriosis in the nerves usually involves Lupron, or some other measure to suppress hormones. It has varying success. I recommend you talk to your Ob Gyn.

      Thank you for reading the blog and commenting.

      -Dr. B

  • Jenni June 21, 2012, 9:16 am

    I have been to the doctor and she says I am a strong candidate for being likely of having endometriosis. I have been on birth control pills for the past 9-10 years (having a period each month though) and 2 years ago I had to have my gallbladder removed (strongly believe it was from birth control related). A year ago I was going through months of having extremely sharp pains during the second week of my BC pills and went to a different doc than I usually see. Had an ultrasound done and he said everything looked normal, I had an ovarian cyst but it was in the normal size range. He never said what it was filled with though. We bumped up my birth control to one with more horomones and I haven’t had the sharp pains since. However, last month my period was worse than usual. My mother had endometriosis so I know that makes me more likely as well. I’m currently debating whether to continue birth control in order to manage my “maybe endometriosis” or whether to quit because I’m tired of the depression, weight gain, loss of interest in sex, etc.

    Does anyone know if stopping taking the birth control could make the possible endometriosis worse? Or would it just make the symptoms worse? I think I could deal with the symptoms since I believe it would be considered a minor case. But if it would make the actual endometriosis worse, I don’t want to do that. I haven’t had any children yet but we are wanting to in the next year or 2. Any help would be greatly appreciated!

    • Shelley Binkley December 16, 2013, 7:02 am

      Hi Jenni,

      Thank you for reading the blog and commenting. Birth control pills have variable effects on endometriosis. For some people they do control the pain and other symptoms quite well. For other women, they don’t help much. We don’t understand why, but it may have to do with the hormone receptors on the endometriosis implants. The only way to tell if going off the pill will make your symptoms worse is to go off and see. I recommend you talk to your Ob Gyn.

      Thank you for reading the blog and commenting.

      -Dr. B

  • Linda June 27, 2012, 5:47 am

    I am 51 and I have been in menopause for 3 years with a couple of periods (post – menopausal bleeding) that cancer was ruled out by my gyno. It’s been a year since my last episode. I had endometriosis laproscopic surgery at 25 and that along with the pill took care of most of my pain until severe cramps with my final periods a few years ago. I have been pain free for several years and now have a burning feeling in my hip/bottom where I used to have endo problems. I do suffer from constipation and hemmoroids (always) but they have never been too severe. I have been doing extremely low rub-on hormones (both) for 5 or 6 years. Is is possible the endo could come back from out of nowhere? I have never had an internal hemmoroid but I guess that could be a possibility. The burning in my hip seems to me moving around a bit.

    • Shelley Binkley December 16, 2013, 6:59 am

      Some people do get endometriosis recurrence even after a hysterectomy. Endometriosis is also associated with the development of endometriod ovarian cancer later in life. This is a specific cell type of subset of ovarian cancer. I recommend you follow up with your doctors as they seem on top of the situation.

      Thank you for reading the blog and sharing your experience.
      -Dr. B

  • Danielle August 27, 2012, 4:48 pm

    Hello I am 33 years old I have been endometriosis since I was around 16 with my 1st laparoscopy at age 18. My Mother wa 1 of 3 girls all with endo and all had hysterectomies early because of it. I have done the Lupron which was right after the last laparoscopy at age 23 and then followed with depo I have been put on numerous type of bc and seem to get violently I’ll on all except the depo. After spending 5 yrs straight on depo I still had pain and was starting to have continuous periods as opposed to none at all. I went off and felt great durring that time on and off bc I studied yoga and noticed because I was able to relax more the pain was more tolerable to a point but we all know the strength this stuff has. After ending the shot though I felt great. After 2 years and believing what I was told that when I was ready to have children I would have to discuss some options…I found out I was pregnant and althought I was completely surprised it was the greatest blessing and again 16 months later I gave birth to my son. Now almost 3 I am back to the stock of super plus tampons and pads and heating pads and iron pills. The dr I saw recently was new due to relocating but suggested a hysterectomy I usually see a specialists at the cc but plan on making an appointment for our next trip up. My mother committed suicide about a week and a half after her surgery and although I know it couldn’t happen that quickly I have a real fear of the side effects and feel as though not natural to just take it all out of me right now especially after the poor woman that still is batting it! Is this endometrial abalation something I can look into and plan on treating the endo on the outside or is this just a bandage? I can hold out longer my only fear is where else will it go? Thank you everyone for sharing your stories as it is often hard for me to find anyone who really understands or knows and can give me more information! So thank you!

  • Shannon September 20, 2012, 1:47 pm

    Hi Dr. Shelly,
    I had fourth stage endo and it was a mess so I had a complete hysterectomy. I eventually healed and thought that would be it. Well now over 3 years later I have what is sometimes a very intense pain in lower left quad. I had stones in the past so the docs thought it was stones since there was blood in my urine also. They did a C.T. with contrast and found nothing related to it. I still am in so much pain at times. I am now living in the middle east and found a nice American family practitioner who conferred with a gyno and they decided it may be left over endo, and started me on progesterone. I was already taking an estrogen replacement. I am also having some round ligament pain which I find odd. My blood work shows inflammation somewhere in my body. Is it feasible to think this could be left over endo, and if so would it be crazy if I trace my worst days to a monthly cycle even though I have no reproductive system whatsoever.
    Thank you in advance for any insight you can share.

    • Shelley Binkley December 3, 2013, 4:52 pm

      Hi Shannon,

      About 15 percent of people who have hysterectomies for endometriosis ultimately have recurrent symptoms of endometriosis and pelvic pain.

      This can be a very frustrating problem. In those instances, Lupron and other hormonal solutions may help.

      Thank you for reading the blog and sharing your experience.

      -Dr. B

  • Samantha September 28, 2012, 1:33 pm

    I was recently diagnosed with endo. 21y/o female extremely painful periods and leg weakness whenever my period is near. I am not able to take any birth control containing hormones because it causes severe migraines and vomiting. The Dr. who saw me in an endo specialist who wants to do a laparoscopy he says I need it very badly. I had an accident with my BF last year and didnt get pregnant so we decided to try and see if we could. We tried for 6 months and nothing. Now I need this surgery and I have no clue what to do. I dont have health insurance and if I were to get insurance from the state it still would not cover the surgery. This Dr. only takes private insurance with out-of-network coverage. I was advised to either buy a HMO insurance which would cover all hospital fees but not the Dr. or anesthesiologist, buy a PPO insurance which costs $1700 per month and still pay 20% to the Dr. , or pay for everything out of pocket which apparently starts at $19,000 not including any charges I would be billed for the hospital. I am in desperate need of advice I am literally going crazy trying to find a solution! Any suggestions are welcomed!

    • Shelley Binkley December 3, 2013, 4:50 pm

      Hi Samantha,

      Sorry for the late response. Did you have the surgery or try something else?
      Lupron might be a good option for you.

      Thank you for reading the blog and sharing your experience. It helps everyone.

      -Dr. B

  • Marli November 14, 2012, 12:01 am

    I have been suffering with lower abdominal pain for 2 years. I have been seen by 17 doctors, had laparoscopy, cystoscopy, colonoscopy, MRIs, CT Scans and uncountable scans. Doctors said there was nothing wrong with me, some even said I needed to see a psychiatrist. Even though I endure pain I never quit work or any other activity I am involved with. A year ago, I started HRT, a doctor said that since I had premature ovarian failure, I needed to take care of my bones. Since then, without linking it, I developed pain in the groin, pubis, inguinal and leg (all on the right side). Doctors wouldn’t know why I had so much pain. Three months ago, because I wanted to try IVF (I have no children), I stoped the HRT and the pain subsided a little bit. Since the IVF will happen only next year (I will need a egg donnor), I re-started with HRT Bio-Identical and on my own I noticed that every time I used the progesterone cream the pain in the groin/inguinal was unbearable. So for the past 6 days I have stopped the HRT and the pain is a bit less.
    Unfortunately I live in the Middle East and haven’t found a doctor willing to do some research to help me, I feel I am on my own. Reading this site, I believe I have endo and progesterone dominant. My question is, how can I have HRT (because there is high osteoporosis rate in my family) and not suffer from this terrible pain? Is it possible to have endo and POF? Which are the alternative treatments for endo?

    • Dr. Shelley S. Binkley, MD November 8, 2013, 5:24 am

      Hi Marli,

      It is indeed possible to have endometriosis and premature ovarian failure. One theory is the problem with endometriosis is the hormone receptors on the implants are abnormal in number and sensitivity. So symptoms may exacerbated by HRT. Most hormonal treatments for endometriosis involve blocking estrogen and progesterone production with a drug such as Lupron.

      Have you found any treatment that works for you since you posted this comment?

      Thank you,

      -Dr. B

  • angelika December 28, 2012, 12:55 pm

    My boyfriend seemed to think my symptoms mimicked that of a women with too how much estrogen. he got me estrogen blocker from hey health food store food store.I also had an ovarian. Cyst and possibllr Endometriosis. I started taking one a day 1 week before my menstrual cycle. absolutely no cramping whatsoever, freaking amazing! !! Never in my life had a had such a pain free week. I also lost 5-7lbs of water weight. I am usually in bed 1-3 days after my cycle starts. I want to share this with other women that estrogen blocker has been godsend!!!
    re

    • Dr. Shelley Binkley, MD November 8, 2013, 5:19 am

      Hi Angelika,

      What is the name of the estrogen blocker you got from the store?

      -Dr. B

  • mary June 27, 2013, 12:58 am

    I have a endometrium the size of my left ovarian is 4.8cm and left ovary is 6.1cm do I have to surgery? Thanks

    • Shelley Binkley October 21, 2013, 6:33 am

      Hi Mary Rose,

      Usually an endometrioma of that size will not go away on it’s own, and does require surgery for removal.
      Thank you for reading the blog and best wishes to you for freedom from endometriosis.

      -Dr. B

  • LisaMarie August 18, 2013, 11:37 am

    I am 44 and six weeks post-op hysterectomy with removal of one ovary due to stage iv endometriosis (I had 5 uterine fibroid tumors ranging in size from 5 cm to 9 cm along with a 9 cm endometrioma barley attached to my left ovary, they also “burned” endo from my remaining ovary and a couple other places). I have/had a rare condition in which my reproductive organs are turned 90 degrees so my ovaries were really front and back and not left and right. I was never regular with periods and often only had 3 per year (PMS every month though). My Dr would like me to try Lupron. I am really unsure about this drug. On the one hand my Aunt also has endo and had to have the abdominal surgery twice due to the recurrence of tumors. I am truly not interested in having this surgery again and like the idea the Luporn would “dry up” the microscopic floater bits of endo. Yet, I am super sensitive to hormones (cannot take birth control pills) and worry about the initial increase in estrogen Lupron causes. I have severe PMDD (to the point my Dr during an episode thought I have Personality Disorder but since it is only happens one to two weeks out of the month I think it is hormonal) and worry about the effect on family. I had been thinking about trying a Progesterone cream, now finding this site I am unsure. Anyone have any Lupron experience? Progesterone cream? Sorry if this is not the right place for this.

    • Shelley Binkley October 21, 2013, 6:13 am

      Hi LisaMarie,

      Thank you for reading the blog and sharing your thoughts. I apologize for taking so long to respond to your comment, but if you have any updates on your experience, please feel free to share them here.

      Lupron is very effective at reducing or eliminating microscopic endometriosis. It does have side effects, but if you can tolerate them for six months, you may find your endometriosis symptoms are markedly reduced. The hot flashes can be treated with a progestin, a progesterone-like synthetic hormone.

      If your endometriosis has lots of progesterone receptors (which is currently impossible to know), you may find that actual progesterone worsens your symptoms. Some people find improvement with progesterone, while others find it doesn’t make a difference, or even can make it worse.

      As to the PMDD symptoms, progesterone has anxiety-reducing properties and can also reduce irritablity. You may find using it improves your PMDD, although, this hasn’t been borne out convincingly in large scientific studies. In my practical experience, I find the response to hormones is very individualistic, and needs to be tailored to the specific person. I think this speaks to the complexity of hormone interactions in our bodies, and our limited understanding of just how potent hormones are to our feeling of well-being and physical wellness.

      Thank you again and I hope you find freedom from PMDD.
      -Dr. B

  • Bryanna L October 22, 2013, 11:27 pm

    Hi, I was diagnosed with Endometriosis at 17 of June of 09′. I have had ever since I was 13 though, I have two aunts & two cousins that have endometriosis. Both of my aunts had hysterectomies. I also have PCOS. I have one child which I conceived 4 months after my laproscopy surgery in 09′. I need tips on getting pregnant again. & I would like to know what to do as far as to help cope with the pain. I have constant leg, pelvic & rectum pain. I have my cycle like every 26 days. I have been on YAS, Lupron, Mirena & none of those things have worked for me. I just don’t know what to do at this point. I’m so frustrated & now my left hand has numbness & tingling majority of the day which is extremely annoying not even sure what that is caused by. But I’m on 21. & I cannot live in constant pain my OBGYN will not give me another Laproscopy. She refuses because of scar tissue, & claims I’m too young for a hysterectomy. I can’t win with these damn doctors here in MN. HELP!

    • Shelley Binkley October 31, 2013, 5:43 pm

      Hi Bryann,

      It’s going to be tough finding a gyn anywhere who will do a hysterectomy on a 21 year old. It does not meet current standards of care. There are other options for treating endometriosis. It does sound like you’ve tried a lot. You may need to see someone who is specifically interested in endometriosis and pelvic pain.

      -Dr. B

  • Mary November 11, 2013, 8:41 pm

    Hi I have found this site very helpful, and have looked at many lately. I have become aware endometriosis may be a cause of pain & may have been for a very long time from teenage years perhaps. I lived with alot of pain that may be caused from a mild form of spinabifida which has affected me in various ways including being part cause of a uterine prolapse in 20s. After one child. Ive realised this year after going off pill & having very big escalation in pain that is cyclical that endo may be culprit. I had not been very informed about it in past, it was found in utero sacrel ligament suspension surgery incidentally & removed but am now realising it is a significant cause of pain as it is all on one side, the same side the endo was removed from 5 years ago. From reading the stories posted by women willing to share their experiences here and at other forums I am learning alot about this strange disease. I would like to ask a questions. Is topical application of estrogen cream ok with endometriosis? I have read somewhere it does not circulate. I use it with pill & with my gp there just doesnt seem to be alot of information on it. Im pre menapause and find the cream very helpful to control some really maddening bladder symptoms that I & my physio / doctor think are nerve related with the back nerves. I just dont want to make a time bomb with the endo. Any links or advice / experiences appreciated.

    • Shelley Binkley December 3, 2013, 4:46 pm

      Hi Mary,

      Thank you for reading the blog and sharing your experience. Topical estrogen can definitely help alleviate your bladder symptoms, as well as vaginal dryness. After 6 weeks of use, it is not absorbed significantly into the blood stream to the degree it should affect your endometriosis. You may have progesterone dominant endometriosis (more sensitive to progesterone) than estrogen, so the estrogen cream may not affect your endometriosis at all. If you do use the estrogen cream and do notice a recurrence of your endometriosis symptoms you should probably cut back on it for a while.

      Keep us posted on your experience. Sharing helps everyone who reads.

      Thanks again!
      -Dr. B

  • Sheila P December 11, 2013, 8:16 am

    Thank you for this site and the helpful information here. I am 50 and had a hysterectomy ten years ago. I have both ovaries. I have had pain and swelling about every 4-5 weeks for about 10 days for two years now. I have had multiple surgeries to try to help. (Posterior repair, scar tissue revisions). I have had pudendal blocks on the left side where my pain is. Nothing helps. A cyst has been seen that is 2 cm at the vaginal cuff on the left side. Could this be an implant that is effecting the nerve? What further diagnostic tests or therapies would you recommend? Thanks for your time.

    • Shelley Binkley December 15, 2013, 6:33 am

      Hi Sheila,

      Endometriosis can recur after a hysterectomy. It can show up in scar tissue, pelvic and abdominal areas, and even areas outside the pelvis. The cyst you’re describing may be impinging on a nerve, depending on its size and location. I’ve even seen in in the lungs, presenting as coughing up blood during the menstrual cycle.

      I can’t recommend further test or therapies without you’re being a patient of mine. I recommend you follow up with your Ob Gyn.

      Thank you for reading the blog and sharing your experience. Best wishes,

      -Dr. B

  • Lana December 12, 2013, 12:16 pm

    I had my son 3 years ago and nursed for 2 years. When I started having periods again they increased in amount and length until I had one period for well over two weeks. My mom was the same age (34) when she was diagnosed with endometriosis. My gynecologist did a transvaginal unltrasound and said she didn’t see anything abnormal, though she did offer to perform a hysterectomy if I wanted one. During this time I had started to have severe nausea and vomiting as well as pain in my right leg. I saw another gynecologist for a second opinion and he insisted that endometriosis couldn’t cause those symptoms. I saw my PCP who had an MRI done and a cyst was found in my brain, but the neurologist insists that my symptoms couldn’t be from the cyst. I am now having hot flashes and daily vomiting along with the pain in my leg and hip. I feel lost because I can’t find a doctor who will help. Do you have any suggestions?

    • Shelley Binkley December 15, 2013, 6:26 am

      Hi Lana,

      It’s concerning there’s a cyst in the brain. These structures may cause the symptoms you’re experiencing. I recommend you keep trying with your existing doctors, or get another opinion.

      Dr. B

Leave a Comment