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Endometriosis and Ovarian Remnants- Is Lupron the answer?
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32jennh posted:
I am a 32 year old female. I am a mother of two small children and have a career in which I just completed a master's program to pursue advancement. I want to be healthy and have a quality of life. I am a very driven person and do experience some anxiety and insomnia. In 2005, my uterus was removed due to fibroid tumors. Endometriosis tissue was found in my uterus. In March of 2010, I had a 10 cm. Mucinous cystadenoma removed along with both of my ovaries and tubes. Since that date, I have had approximately eight abdominal surgeries to remove recurrent ovarian remnants which present as complex ovarian masses; 2 of the 8 surgeries were due to complications post surgery. For the past year, I have been under the care of a gyno onc specialist at a major urban research hospital. This doctor removed the last ovarian remnant last November and found endometriosis in my abdomen. Unfortunately, this last October 2011, I presented symptoms and after a CT another ovarian mass has returned. My hormones fluctuate as these masses seem to produce hormones and cycle as if I had ovaries. As of the end of March, I have been in increasing more and more pain. The pain presents in the location of the mass which is in my lower back (like back labor) and lower right groin/ abdominal pain which radiated into my lower right hip. The pain is substantial and has made in impossible for me to work. On the last CT, one week ago, the mass is showing calcification which she believes has caused a drastic increase in pain. My doctor also believes that the endometriosis is accounting for the pain more so than the mass. The mass is located in such a position that it is unable to be drained by an radiologist. It is attached to major structures such as colon, vaginal cuff, and right ureter. My doctor wants to avoid surgery due to the surgical risk- number of past surgeries, past increasing surgical complications, risk involved with surgery due to attachment of structures, lack or resolve with past surgeries...No cancer cells have been found which is frustrating because this does not present as a typical benign situation. My doctor has stated that this is the rarest case she has ever seen of ovarian remnant syndrome. Currently, I have been taken off of all hormones and presenting no menopausal symptoms which means the mass has to be producing a substantial amount of hormone. My doctor has determined that we should try the injection lupron for the next 3-6 months. She has explained that the side effects will be substantial, yet she thinks this will kill the endometriosis remaining or drastically reduce it and possibly kill the tumor and relieve my pain. I want a solution to this forever ending problem. Continuous surgery is not the solution as it has proven unsuccessful as a solution to this problem.I am to young to accept contentment and acceptance with this is the condition and pain I should expect to live the rest of my life in. Other than kidney stones, I have no other medical conditions. I have read various blogs and information about Lupron and am concerned about the side effects and controversy associated with this drug. Is this an appropriate treatment? If not, what other treatments are possible? Something has to be done and I want a resolve for this condition. A year from now, I want to be able to say I am healthy with no problems.
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Jane Harrison Hohner, RN, RNP responded:
Dear 32jennh: You are correct in that ovarian remnant syndrome tends not to keep occurring. However, if you have substantial adhesions (filmy bands of scar tissue produced by endometriosis, inflammation, or recurrent surgeries) the risk of recurrent ovarian remnants is increased.

One question might be, if your ovaries are removed, and you have no menopausal symptoms, do you still have non-menopausal blood levels of estradiol. Typically a menopausal blood estradiol would be less than 20-30 picograms. As you likely have read, the body can convert other hormones (eg androgens) into weak estrogens. Once ovaries are gone the principal source of androgens are the adrenal glands. Given that you are under the care of a GYN oncologist, I would bet that they have ruled an estrogen or androgen secreting tumor.

I could not find any randomized trials of Lupron for ovarian remnant syndrome, but Lupron has been shown to be very effective in suppression of endometriosis in any body site. It sounds like your MD is also trying to avoid another surgery by trying a hormonal suppression approach. As you know, if a woman had improved pelvic pain with Lupron, that can help confirm endometriosis as the culprit.

It is dreadful that you have had to endure so much at such a young age--and with two young children to care for. My advice would be to consider your MD's suggestion as a trial for the pain. You can always bail after the initial injection. Hopefully the mass will shrink and the pain abate.

If you elect to try the Lupron, would you be willing to send us an update on your decision and condition? Because of the rarity of your case, another woman with a similar issue may be able to benefit from your experience and insights.

In Support,
Jane
 
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32jennh replied to Jane Harrison Hohner, RN, RNP's response:
Thank you for your response, Jane. I will most definitely keep you updated on my status.

The pelvic mass is secreting hormone. It is as if the mass goes through cycles like a functioning ovary. I have had to take altering hormone levels determined on side effects that my body has telling me that I have either too much or too little based on the cycles this mass and the previous have produced. After being off hormones completely for 5 days, I started having mild hot flashes and night sweats. As I predicted, the mass seems to have decreased in fullness compared to just a week ago according to yesterdays examination.

I started the Lupron injection yesterday. I want to convince my doctor to do a study on this because of it being so rare. So far, the only side effect I am having is a headache that is affecting my eyes (feels like eye strain). I am hopeful that this will work.

Thanks,
Jennifer-32Jennh
 
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Jane Harrison Hohner, RN, RNP replied to 32jennh's response:
Dear Jennifer: Ah, so the mass is/was secreting estrogen in some fashion. If this is the case then the Lupron, after the initial flare, should suppress remaining granulosa or thecal tissue activity. Thanks for the feedback. We'll be interested to hear about your response to treatment.

Yours,
Jane
 
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coils replied to Jane Harrison Hohner, RN, RNP's response:
32jenn and Jane,
Please continue this conversation since you are 7 months further than me.
I have a very similar story to you. I have had 10 surgeries each time being told it was the last one. The most recent surgery determined my ovaries (bilaterally) had returned after being removed 7 years prior. I have also had functioning hormone levels through the past 11 years of this experience. I am on my second round of Depot Lupron and I am not seeing much progress. I too have a gyno oncologist as well as a team at Mayo. Although i am told how rare this is and how my case is more complicated than most, I still feel very in the dark.
My depo experience has been a roller coaster. The hot flashes are frequent and I did not have a good experience on the Add back therapy. I had severe mood swings including rage and irrational thoughts and severe headaches.
I feel I have no other choice but to stay on the Lupron for 6 months. I have no seen any documented cases in accordance with ovarian remnant sydrome and would love some reassurance.
 
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Jane Harrison Hohner, RN, RNP replied to coils's response:
Dear coils: Than you so much for writing with your similar, and very uncommon, condition/treatment. I do not know if 32jenn is still following up with us. Unfortunately, I have no way to contact her directly. Sometimes women do check back after a time. Even if she does not, you have added some very important insights which may be found by other women with similar symptoms.

I would wonder if you too had endometriosis (which increases the risk for ovarian remnant syndrome). Hopefully some other source of the hormones (eg adrenal tumor) was ruled out.

Yes, Depo-Lupron can be difficult to endure with its myriad of unpleasant side effects. I'm really sorry that add back therapy did not help with such side effects. [Note to other readers: Add back therapy means giving the woman small does of estrogen and progesterone (about 1/5 dose found in a low dose birth control pill) after all of her own estrogen and progesterone have been completely suppressed by the Lupron.>

I did another lit search at the National Library of Medicine site but it yielded no reports of long term Lupron treatment for ovarian remnants.Another search of popular sources found this discussion at hystersisters on ovarian remnant syndrome:

http://www.hystersisters.com/vb2/showthread.php?t=381678

Even if 32jenn does not write back, please consider letting us know about your outcome. This post and thread comes up as number 3 in a Google search so you know other women will see and appreciate your input.

In Gratitude,
Jane
 
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hlsalazar replied to Jane Harrison Hohner, RN, RNP's response:
Hi, I'm 42 years old and began the hysterectomy process at 32. I initially had just my uterus removed and a year later started developing cysts on my left ovary, which I then had removed and elected to keep my right ovary as it was functioning well. During the 2nd surgery the doctor discovered severe adhesions and had to stop surgery and called in a general surgeon to assist her with the removal of my left ovary. I had no other problems until 2011, and then began developing severe left upper quadrant pain (left upper abdomen). It was discovered that I had a cyst growing on my right ovary and we decided it must be radiated pain to my left side. We elected to watch and wait. After 6 months the cyst began growing and the decision for surgery was made. I then had an oncology surgeon remove the right ovary, due to my working relationship with him and my severe adhesions. He believed it was a successful surgery and I recovered without any complications. I had one major hot flash post surgery and never had another one. I visited my regular gynecologist to update her on my surgery and to discuss hormone replacement therapy. She was shocked that I was not experiencing major menopausal symptoms and we decided to just avoid hormone replacement for the time being unless I started having symptoms. 10 months later I began to have the same upper left quadrant pain that I experienced in 2011. As a nurse my initial thought was that my ovary was still in my body. I don't know why I thought that initially but I did and I felt the surgeon made an era and only removed the cyst and not the ovary. I made an apt with the surgeon for follow up, which they felt unusual since he had released me, and was told to see my gynecologist. I work in the medical field so one of my doctors ordered an ultrasound and discovered a fully functioning ovary. We checked my hormone levels and they were normal. Explains why I was not experiencing menopausal symptoms. After reviewing the information the surgeon was very compliant with allowing a follow up and suggested this was an ovarian remnant, which he had never caused in a patient before. He had performed surgeries to remove other failed oophorectomies which led to ovarian remnants and he was quite distressed he had caused this situation somehow for me. I initially was on an emotional roller coaster but now have calmed and accepted that I had an excellent surgeon with a very good track record and this probably was a result of my severe adhesions. We've elected to use Lupron and I just received my 4th injection. I had minimal side effects but the hot flashes became increasingly worse after the 3rd injection. I have now been placed on premarin 0.3mg daily, as his thought is that I do not need the progesterone because I do not have a uterus. Would like your input on this decision. I have done better with my hotflashes but have to say that starting today I am experiencing some mild cramping, like the beginning of a menstrual cycle. Which I've not experienced in YEARS. Of course I won't have a menstrual cycle but I'm concerned as to why I'm feeling this cramping. Thank you for all the information above, it's nice to know I'm not alone. Although I wouldn't wish this condition on anyone else. Thanks again. hlsalazar


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