Considering Hysterectomy for endo

Hi, my name is Kirsten. I am 34 and my dh is 36. DH and I have been together for 18 years, and endo has been with us the whole time... I started having endo pain when I was 15, was told I was psycho-somatic for three years; then at 18 started having black outs from pain. Based on surgical reports and pics, I have pieced together I was stage 4 at 18. Had surgery at 19, nothing "visiualized", but still had pain... at 25 had surgery again stage 3. Had surgery at 33, stage 2. Just had surgery last week, now I am stage 4 with cysts and all.

I know all that sounds bad and I want to point out there are two OBGYN's in there too... I didn't realize how lucky I was when my old OBGYN retured when I was 32... my new one is awesome! They're both men, and even DH likes the new one better, lol! There is darn near every bcp and some lupron in there too. (I'm trying to hit the highpoints...)

After this surgery the "H" word was presented to my husband as an "eventual" thing.

We have no children, we tried but the IVF made the endo worse... so we are in the process of adopting from foster care. We haven't gotten a placement or referral yet, so I am thinking if it is eventual... maybe I should throw in the towel on my ovaries and uterus! Then I can focus on parenting... anyone else have any input on this??

I know my doc would do anything he could for me (he has the patience of Job), but frankly after 5 laps I am starting to feel like a circus sideshow! That and I am sure he is having a hard time finding new places in my bellybutton to make an incision, one of these days I may wake and he will have had to take it out!

I don't have the crazy heavy periods, but that could be b/c I have a 21 day cycle, so it may not have time to really get going.... I just have a lot of pain, sometimes I can't drive b/c it makes me so light headed and seat belts are so painful!

Thanks,

K~

Good luck .. i had a hyst for endo and adeno and even with endo bback i am soo glad i did .. but that is just me good luck

may I ask your age?? did you have any children??

((kirsten62975))

I had my hysterectomy when I was 25. I was married (still am) and did have two young boys. At the time of my hysterectomy, pain from the endometriosis was not my problem. My problem was that I had been bleeding just about every day for two years and we couldn't get it to stop. A lap to see what was going on turned up the stage IV endometriosis.

I was one who had a lot of surgical complications as a result of my hysterectomy and all of the endo was not removed so I have future issues including pain and surgery.

Neither a hysterectomy or oophorectomy are sure cures for endometriosis. The removal of the uterus may or may not improve your symptoms. Bleeding should stop and any uterine pain should be a thing of the past. But any pain that is not associated with the actual uterus would not be alleviated. The key is to have the actual endometriosis removed and not all doctors, including my GYN, have the skills necessary to do so. Before you make your final decision, I would suggest at least considering consulting with an endometriosis specialist.

I wish there was an easy answer when it comes to endometriosis and a hysterectomy! But, there isn't one! A hysterectomy is not a risk free surgery by itself and then knowing it is not a cure for endo just complications any decisions that need to be made!

I wish you all the best as you work through this decision process to determine what is best for you!

kirsten,

I wish there was an easy answer! Unfortunately, as Weiser pointed out, there isnt when it comes to endo.

Like you, I went through some vigorous fertility treatments. I think having put all of those hormones in my body made my endo flourish beyond anything I had ever imagined.

My abdomen was swollen, I was bleeding A LOT, and the pain was horrendous. For me, it was absolutely a quality of life issue.

I did my research, I knew a hysterectomy was not a cure. But, at my age 30, and the point I was at in my life, it was at least an CHANCE at a pain free life.

I would encourage you to do your research, as it appears that you are doing. Know what the possible outcomes could be so there arent any surprises. Also, as Weiser mentioned, seek out an endo specialist!

Ultimately, you are going to have to make the decisions for yourself. I am only a year post op and have had a VERY easy recovery. So for me, at least at this point, it was a good decision. But, I am fully aware that it could change at ANY moment. I am thankful for every single day I am without the pain and bleeding. At the same time, I am not naive to think it will never return. Endo is a terrible disease and as you know, there isnt a real cure.

Good luck and just remember you are NOT alone!

:starhugs:

I had a hyst 2 weeks ago for adeno and they discovered Stage II endo during the surgery. Luckily I had consulted an endo specialist for the surgery, so he was able to take care of everything while in there. Since my uterus was causing a large part of my problems, I feel better already. The areas that had endo are still healing and occasionally hurt but nothing like before.

The hyst was first tossed out to DH and I a year and a half ago when my pain got so bad I was in and out of hospitals and doctor's offices while they tried to figure out what was wrong with me.

We chose not to go the Lupron route. I had the Mirena for a year and had no bleeding and no periods on it, but the pain was still there. I didn't want to deal with hormones anymore - I wanted the best solution, which for me was the hyst.

Thanks for all the replies!

There aren't many other ladies out there that have dealt with the endo much less the whole "thing" I got going on... figured I had a better chance of finding them here!

Thanks again! ♥