PCOS/Endometriosis/Hysterectomy

[beautiful1096.livejournal.com]

I just underwent a laproscopic hysteroscopy and have been diagnosed with PCOS and endometriosis. I have debilitating cramps all month long and my quality of life has just gotten increasingly worse. I have gone all of the traditional routes of treatment, Mirena IUD, birth control pills and nothing has worked. My OB/GYN is suggesting our next course of treatment would be a hysterectomy.

I was wondering if anyone has undergone alternative forms of treatment in lieu of undergoing a hysterectomy. I am 33 and the idea of loosing my uterus is terrifying at this moment.

TIA

Comments

[archangelbeth]

http://www.nlm.nih.gov/medlineplus/ency/article/000915.htm lists:

Treatment to stop the endometriosis from getting worse often involves using birth control pills continously for 6 - 9 months to stop you from having periods and create a pregnancy-like state. This is called pseudopregnancy. This therapy uses estrogen and progesterone birth control pills. It relieves most endometriosis symptoms. However, it does not prevent scarring or reverse physical changes that have already occured as the result of the endometriosis.

Other hormonal treatments may include:

• Progesterone pills or injections. However, side effects can be bothersome and include weight gain and depression.

• Gonadotropin-agonist medications such as nafarelin acetate (Synarel) and Depo Lupron to stop the ovaries from producing estrogen and produce a menopause-like state. Side effects include hot flashes, vaginal dryness, and mood changes. Treatment is usually limited to 6 months because it can lead to bone density loss. It may be extended up to 1 year in some cases.

Surgery may be recommended if you have severe pain that does not get better with other treatments. Surgery may include:

• Pelvic laparoscopy or laparotomy to diagnose endometriosis and remove all endometrial implants and scar tissue (adhesions).

• Hysterectomy to remove the womb (uterus) if you have severe symptoms and do not want to have children in the future. One or both ovaries and fallopian tubes may also be removed. If you do not have both of ovaries removed at the time of hysterectomy, your symptoms may return.

If your provider has jumped from HBC to full hysterectomy without suggesting lapraotomy, if you have not expressed a desire to never bear children, I would want a second opinion. (I'm reading between the lines here, that you desire to have children or have more children?)

(You may also want to consider if your situation is such that you would wish to try to become pregnant in the near future; pregnancy, if feasible in your current circumstances, would be likely to stop the progression for the duration of the pregnancy, at least.)

http://www.ngc.gov/content.aspx?id=11380 is another, rather technical, site about various things to try and how well they might work.

*offers hugs*

[beautiful1096.livejournal.com]

I underwent a Pelvic laparoscopy yesterday to remove adhesions that were present. My issue is both the PCOS and the endo. I have 3 children and my fiance had a vasectomy 18 month ago. We are more than certain that we are done having children.

I have a horrible reaction to BCP so they are not a treatment option for me. I had a Mirena for 5 years which seemed to keep the endo at bay but i did notice my PCOS symptoms worsening. My Mirena was removed and replaced this past April and everything flared up horribly despite the absence of my period. I had it removed in October.

We are wanting to stay away from the side effects of progesterone as my weight has increased due to the PCOS and I suffer from PTSD and have pretty severe anxiety which is all assisted with mediation.

[archangelbeth]

Ahhh. Okay, I can see why the provider made that suggestion, now. Sorry I mis-understood your situation! If the Depo Lupron and nafarelin acetate aren't an option, then I don't really have any other suggestions, I fear. O:( I hope that you can get some useful data from other VPers!