Hi Joanne, I am 34 & have a partial total laparoscopic hysterectomy scheduled for next week. Am having everything but ovaries removed. Same reason, Endo, chronic pelvic pain & I can not have any more surgeries or any more Lupron treatments. The one I am on has not helped & i've been on constant pain for 5 months. The way I looked at it, we have to do what is best for us. Everyone's experience & Body is different. At first earlier this year I walked into my GYN's office & said 'just take everything out' then a couple appts later, when he told me the news I panicked & went to see another GYN who recommend leaving the ovaries due to my age & family history of heart disease & osteoporosis. After attempting the final Lupron treatment I made the decision to have the partial done! Enough is enough & I can no longer live like this: I can't walk, drive, take care of my kids, sleep, wake u when I do sleep in terrible pain. My advise is to out weight the risks with your quality of life & speak to your GYN about your concerns. Remember we are all different & if is affecting your life as is mine, what other choice do we have! God Bless you & hope all works out for the best.
Thankyou for your thoughts, i am so confused with it all really. i know i can not have my ovaries out due to the problem i have with the hormone drugs and i am aware that it does not remove the endo, my GYN has told me that, but he said it may relieve some of the servere pain im in.
It does affect my lfe, pain is the worst, im having a kidney infection every month due to it being every where, bowel problems and just even to sit down, i have to sit carefully due to pain.
Hurts when i go for a wee, you name it, and sleep, headaches, the list goes on.
I will let you know how i get on today and what i decide to do, you are right everyone is different and reacts differently.
Hopefully we will be one of the few who it helps, when your in this situation you have to try something or you will go mad.
I wish you a very speedy recovery and my thoughts are with you at this confusing and worrying time.
I have been to see the gyn yesturday and requested a second opinion as i9 was not happy with his answers to my questions, they are refereing me to another gyn who specialises in endo,,,,, why didnt they do that in the first place.
They have said he may do stripping of the endo, has anyone had this done.
Im sure it is what i ahve had already, ablilation i think thats what its caleed and laprascopic treatment twice.
I finally had the surgery last week on the 5th. I can tell you from experience and friends who have had the oblation, it works for some & are very happy and it hasn't worked for others or if it does it eventually it grows back. It depends how old you are, is what I was told. The younger you are the more chances you have on the "possibly" of the endo lining growing back somewhat. I had 3 surgeries in which they removed the scar tissues & endo adhesions, & fibroids, they were able to clean everything out. However, both GYN's I went to see & this one that did the partial hysterectomy did advise me to do the hysterectomy. Not because it may clear it completely, because in "some women" it may grow back, but because the symptoms are relieved. If you don't have a uterus (incl cervix) there is no shedding & have less chances of Endo returning if they clean you of all scar tissue & endo adhesions. She was very clear to me prior to surgery & told me to understand that this may not alleviate my pain completely however, the pain should never be the way it was before. I decided to take my chances after over 6 months of dealing w/ non-stop pain 24/7 (I was going mad as you said).
I am happy to have done the surgery, I can tell you that I have not felt the way I feel in years (libido) and I can't have sex for 5 weeks more weeks & I am still in pain from surgery. I did keep my ovaries, they took out my uterus, cervix & tubes. My issue ended up being the Essure tubal ligation I had done more then the endo this time around. The blockage was wrong and it was creating irritation & swelling in my tubes, the more time passed the worst the problem got to the point I couldn't walk, (I used a wheelchair), I couldn't have sex in over 6 months, I couldn't have a life of any kind. She is not sure if I had endo, because of the Lupron, it could have diminished any adhesions, but I did end up having the hysterectomy & up to now I can not be happier.
The bottom line is that we have to do what we feel is right for us as individuals. We all cope w/pain different & have different family support. Doctors can say whatever they want but the one who is is pain is us not them, it's "US". We had asked my old GYN if it could be the Essure causing my pain & I was told it wasn't. My new GYN said it could be and she would explore the possibility when she did hysterectomy & it did end up being possibly the biggest cause of my pain this time around. Explains why Lupron didn't help with my pain. Like I said, you have to find a doctor who understands you & sympathizes with your pain. It is not normal & right for us to live in pain every day if there is something that we can do to even just make it better. Better is better then living in agony! That is the way I see it and I am happy with the decision. I too had stage IV Endo and what I lived through this year I do not wish it upon anyone! Let me know if I can help in any other way. I hope this new Dr. can help you with your pain and make whatever decisions you may need to make. xoxo
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