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

[kaberett.livejournal.com]

I'm so sorry that you're having to deal with this double whammy of diagnoses at the same time as making a difficult decision about treatment.

I was diagnosed with stage IV endo about eighteen months ago, and I've written up a list of treatments I have tried or know about (http://kaberett.dreamwidth.org/10425.html).

The community endometriosis might also be able to provide you with other suggestions, including modifications to diet that some sufferers have found helpful (though I think there's very little scientific support for any One True Diet). Anytime Yoga (http://anytimeyoga.wordpress.com) is a blog run by one of our maintainers here (hi frolicnaked!), about accessible yoga, by someone with endo - yoga is another thing that's frequently mentioned.

Is your doctor aware that hysterectomies are not a guaranteed cure?

If you do want to hear from people who've had hysterectomies, I'm sure they'll be willing to comment here.

[kaberett.livejournal.com]

I should clarify that the list of stuff I've tried looks REALLY depressing, but honestly it seems like I'm an incredibly awkward case, so don't be disheartened by it!

[grace-is-gone.livejournal.com]

Have you tried Lupron? I did two rounds of it, and things settled quite a bit for me.

[empresspatti.livejournal.com]

It was 18 years ago for me - but I had a total of 6 Lupron injections and it helped tremendously.

Possible side effect - I went through menopause fairly early, in my mid 40's.

[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!

[sandi1743.livejournal.com]

i have endo and PCOS. I was given this same rec at 17 by two doctors (same practice) - i found a new practice. I ended up with an awesome RE/OB/GYN - i am not 33 and fully intact and planning on trying to get pregnant in about 1.5 years, and the RE thinks that all should work. was it always easy - no but totally worth it. why kind of doctor is this? Have they done a lap with either Lupron or Megestrol Acetate for at least 6 mts post-op?
Also, before considering something like this see everyone and anyone to make a fully informed decision.
best of luck

[frolicnaked.livejournal.com]

These suggestions would be in addition to everything other folks have mentioned already:

Would your doctor be willing and able to refer you to a pelvic pain specialist (either M.D. or physical therapist) if there's one in your area? The PT I saw for mine at least gave me a lot of coping methods that do help reduce the pain. (For A LOT to a lot, but still.)

Speaking of pain, have you tried specific pain-relieving types of medications with your doctor (I see discussion of BC in your post, but no analgesics). If you haven't discussed prescription pain relievers and that's something you'd like to consider, it might be an additional option. If your OB-GYN is uncomfortable prescribing longer term pain medication (mine was), it might be worth asking for a referral to a pain clinic.

This is a longer shot, since its purpose is generally for heavy bleeding rather than pain, but would you be willing to try something like endometrial ablation (http://community.livejournal.com/vaginapagina/tag/endometrial%20ablation)? I mention this because when I was researching for my own ablation, studies showed that post-ablation, something like 2/3 - 3/4 of patients (depending on the specific method used) reported little or mild menstrual pain.

[beautiful1096.livejournal.com]

I have been prescribed 7.5MG of Hydrocodone. Most of the time it helps. My family practice MD prescribes it, my OB/GYN is vvery uncomfortable with any long term use of pain meds. We've discussed an endometrial ablation...my concern is that the pain I have is more from the PCOS and less from the endometriosis.

Did you have the ablation? Would you be willing to share your experience?

thank you so much.

[frolicnaked.livejournal.com]

I wrote up my experience with the ablation itself in this post (http://vaginapagina.livejournal.com/19166056.html). Ultimately, for me, while the ablation did decrease my flow some, it wasn't nearly as much as I'd hoped. (It also didn't decrease my pain, but given that the vast majority of my endometriosis is not adjacent to my uterus, I was never expecting the ablation to work for pain.)

That said, the procedure itself was reasonably easy -- having the wand go through the cervix felt about like an IUD insertion; once everything was inside, it just felt kind of full/bloated for a few minutes -- so I'm considering trying a second one (with the advice of my OBGYN) before putting hysterectomy back on my table of options.

[io2012.livejournal.com]

In case you aren't already aware of these resources, here they are:

http://www.endo-resolved.com/messageboard.html

http://www.endometriosisassn.org/

http://www.endocenter.org/

http://www.endofound.org/ (especially: http://www.endofound.org/video)

I learned so much about endometriosis when I was scheduled for my laproscopy. Thankfully my issues seemed to be related to an immune reaction to my IUD, and not endometriosis. I do have PCOS, though, and having an immune reaction (similar to mild endometriosis) while having PCOS is a really tough thing to go through.

However, when I was researching the MOST IMPORTANT THING I found was that all laproscopies are not created equal! Many, many surgeons are only familiar with one presentation of endometriosis and miss many implants and adhesions, allowing endo to regrow after the laproscopy. In these cases, relief from laproscopy is only temporary. However, a specialist who removes endo in ALL its forms can offer much longer lasting relief. Many video presentations on the endofound website are based around that theme.

All this to say that just because you have had one laproscopy, doesn't mean that hysterectomy is your only option. In fact, MANY women on the endo resolved board had hysterectomies only to have reoccurance of their symptoms because there is no hard evidence that endo actually comes from the uterus (the tissue LOOKS like uterine lining, but it may in fact be there from birth and only be activated by reproductive hormones during puberty). Good luck - endo is a really tough diagnosis but you can get help!

[io2012.livejournal.com]

Also, I just thought of pelvic floor physical therapy. It is NOT a cure for endometriosis at all, but if you have other intervention (lupron treatment, hysterectomy, another laproscopy), I highly recommend it during the recovery phase. Call the OBGYNs, urologists, or reproductive endocrinologists in your area and ask them if they refer to any physical therapists with experience in pelvic floor physical therapy.

Pain from reproductive organs frequently causes muscle guarding in the pelvic floor muscles (think of how your neck often hurts after a bad headache from holding in a stiff position). Physical therapy can help relieve THAT pain.

[somniumdraconae.livejournal.com]

That last part is very true. Recent research has implicated multipotent stem cells from bone marrow, as a potential source culprit.

Also, if you're looking for the latest greatest research options and your GYN is comfortable writing off label prescriptions, Aromatase Inhibitors (letrozole/Femara is one example) are showing great promise in treating endometriosis. They may also be useful for PCOS, too, so this could be a great option for you to bring up with your doc.