Hysterectomy for endometriosis and PCOS at 30 years old? (2014)

I'm very new to this site and I just don't know if anyone can give me some input? I'll try to make this as brief as possible.

I'm currently 30 years old and I was diagnosed a little over 10 years ago with Endometriosis and PCOS. Throughout the years I've done a number of "treatments", including:
-High doses of BC (with and without placebo's)
-Implanon (another BC - complications after just a few months)
-IUD (complication after few months)
-Lupron injections (3 times)
-Laparoscopic surgery (3 times to "remove" endo)
-Herbal remedies (been seeing a Holistic doctor)

My pain has just gotten worse throughout the years (so bad now I'm having trouble working, etc.) I have started seeing another specialist within the last year, & I have another surgery planned for this year that will be different than the others, as I guess there are some issues with my Uterus as well as the veins in that entire "area"...
My question is - Is there anyone who's gone/going through something similar and had a hysterectomy? AND had a positive outcome? I've been thinking about doing it for over a year now, but other life issues have delayed me from taking the next step.

I have a strong family history of ovarian AND breast cancer, and I'm pretty much content with my current family size, so that isn't an issue I also know that this wouldn't be a "cure" - I

Thank you for reading this and for your thoughts! I really appreciate it!

I had a complete hysterectomy when I was 28. I am now 30. There are pros and cons. The positive ( which I do my best to realize) is that the pain from endometriosis was gone. The other symptoms I was having is completely gone. I consider myself blessed to not have to be in that pain anymore. There are things to think about like how will you replace your hormones and deal with hot flashes but that is small compared to the pain (in my opinion). Every situation and everybody is different though. I hope everything works out for you

I made my decision to have a hysterectomy as the pain and periods were impacting on my quality of life and work. I thought about it for 6 months before going ahead with it. I did not try any other treatments first, as he thought my diagnosis was adeno, the endo wasn't discovered until afterwards.
From reading other posts, it is important to see an endo specialist to ensure all the endo is cut out properly minimising the risk of it returning.
I am only 6 weeks out, but so far so good, with no signs of the pain yet, I don't regret my decision and all is positive so far. Time will tell I guess. personally for me it was the right choice and I was lucky to have a skilled and experienced surgeon.

Thanks so much Ladies! I've been seeing the Endo specialist for almost a year now, but have had to delay the procedures/surgeries for other reasons... I know 30 is an early ago to start HRT's but this pain has reached a point I can no longer stand.

I had my hysterectomy when I was 33. Unfortunately the endo and pain came back and then out went my ovaries a year later. Now 2 years post hysterectomy I think my endo is coming back yet again. I never had kids but I dont regret my decision to have the hysterectomy because I can spoil all of my neices instead ;-) Anyways I hope this helps and I hope you fi d some relief from your pain!

Julia

Hi,
I had a hysterectomy and removal of both ovaries at age 29 I too had known about my Endo diagnosis for about 10 years. I also had/have PCOS. I went through many similar treatments to you, including 2 laparoscopies for removal of Endo. I was desperate to get rid of the pain, and went through with the hysterectomy despite finding out about two or three weeks prior to surgery that this was not a guarantee that I would be Endo free.

I have to say that I DO definitely regret having a hysterectomy. Do I miss my period? No! Absolutely not. However, the surgery wasn't a cake walk for me, and my recovery was long, complicated, and painful. After surgery my DR didn't want to put me on HRT because of concerns about reoccurrence of Endo, I went about 9 weeks after surgery with nothing, and let me tell you, I was a wreck. I started having hot flashes in the hospital the first night after my surgery, and things only went down hill from there. Apparently I was one of the lucky ones who did not have any excess E stored in my otherwise useless fat cells
I was hot flashing, night sweating, insomnia, intense bladder pain (like the worst bladder infection you've ever had, I couldn't even walk or stand up straight, I looked like the hunchback of Notre Dame). The worst low E symptom for me was really bad mood swings/ depression/ crying jags. I was actually suicidal for a brief period after my hysterectomy, and that is NOT like me at all. Thank god I told my DH, and he was able to help me to get what I needed, namely HRT.

Now I am about 2.5 years out from surgery, and I am still struggling to get my hormone levels up to where I need them. Its not as easy as it might seem. Because my hormone levels have never been right (maybe because of that) I have had chronic migraines that totally debilitate me since my surgery. Also, my cholesterol levels have gone up, my heart rate has gone up, my thyroid appears to be malfunctioning, I am being referred to a cardiologist for concerns that I have developed some cardiovascular disease due to the HR, and the fact that my legs and ankles swell up like balloons now, and I get really bad leg cramps. I gained 35 pounds just in the last 6 months as my E levels have plummeted more, and thyroid has started to go wonky. Well, you get the picture, and in addition to all of this, about 6 months after my hysterectomy, I started to experience "Endo pain". It has continued since then. I don't know that it is Endo, since I haven't had another Lap to look, but it's possible, maybe even probable. And there are lots of women on this forum who have had confirmed Endo after hysterectomy. My symptoms are very similar to what I had pre-hysterectomy.

The bottom line is, since Endo is not cured by having a hysterectomy or removal of your ovaries (and neither is PCOS BTW, it is an endocrine systemic disease), why should you put yourself through that? there are so many things that surgical menopause has the potential to cause, unless it's a sure fire way to fix whatever ones illness is, I would never recommend it. The only way to get rid of Endo is to remove it through excision.

I hope you are able to talk to your specialist about this, and come up with a good treatment plan for you

An important thing to note is that many women with endo also have adenomyosis. After my excision surgery for endo I was still in a lot of pain, and discovered this was due to adenomyosis. I had a subtotal hysterectomy leaving my ovaries and I have been great since then (8 months).

It's really important to work with a true endometriosis specialist, especially with more severe or complicated cases of endometriosis. I've had 3 different endometriosis specialists, one had no clue, one is competent at excision but not with some other stuff, and the cooky old guy who isn't retired because he loves surgery so much ended up being the one who could fix my problem. If hysterectomy and/or BSO is on the table in any form and endo is involved it is SO important to work with an expert to be sure you are making the right decision, and getting surgery that will properly remove the endo lesions. If finding someone local or covered by your insurance is difficult it may be worth it to even do a consult with all of your records.

I had endo along with a "boggy" sitting to far back and pulling to the right causing a tear in the left ligament of my uterus as well as dilated blood vessels. My pain started and for 3 mons DR's couldn't even figure out what was wrong expect I had the worst abdominal pain that never went away. I saw an gyn who said lets do a lap to take a look and see ( as nothing showed on CTs or X-rays) that's when he found the problems. He told me unforatntly nothing would "fix" it expect a hysterectomy. Me and my husband would have loved to have a child together but knew it was a long shot but always kinda hoped for miracle. It took another 4 mons of meeting with my Dr. And trying other things first as I was 23 at the time of the lap. He finally said I can tell your ready! I had the hysterectomy 2 years ago! He told me if the ovaries looked healthy he was going to leave them, which he did. I'm very glad that I had the hysterectomy and totally LOVED my Dr! 2 weeks later the pain came back it's not as intense but still bad... It's believed that the endo is back but I have some other health problems that they don't what they are yet. We moved, I saw my new gyn and asked him to remove the ovaries and he had 2 mons time window to do it in, because my husband was deploying. He wanted me the Lupron first ( I was already going into a surgical menopause) which I have done it has giving me some relief but not enough that I'm taking ultram all day long still. My husband is back home now!!! I will be having my ovaries removed before June but it's not scheduled yet. I hope that your surgery goes as plan and for a speedy recovery! I know this pain is diffucault to live with and hope you get the relief you deserve! Take care!

I'm currently 29 years old and have battled PCOS/Endo for the past year, with it only getting progressively worse. I had a laparoscopic surgery in February to remove cysts on both ovaries and that is when the endometriosis was really discovered, attached to bowels and bladder. After removal of endo and cysts, I was great for about 2 months, then it all came back in force. Doctor tried depo-provera shot for 2 months, no change or relief of symptoms. I've bled for the last 8 weeks straight...

I've opted for a hysterectomy and have been fighting for it for the last 2 months -- finally got approval and getting things sorted out for it. I know there are definitely pros and cons, but when you're in so much pain and can't find any relief, something has to be better than nothing! I'll think of you and hope you come to a decision that brings you relief.

I'm just curious if you went thru with the hysterectomy and how things have been since. I'm 35 and was diagnosed with PCOS and endometriosis almost 8 years ago. I've had 2 surgeries. Things are starting to go back to the way they were before my last surgery. I'm trying to decide if another surgery is the best option or if a hysterectomy is. I have some pain but my biggest issue is the heavy bleeding.