Endometriosis on my kidneys?!
Posted , 4 users are following.
i have recently been diagnosed with endometriosis i had laparoscopic surgery to remove it and the doctor said it may be on my bladder and bowels. i get extreme pain at times during or before urination. i feel pain in my kidneys. i had 2 alcoholic drinks the other day and nearly passed out from the pain. three days later i still have pain near my kidneys. one doctor recommended hysterectomy but i am only 24. help. located in new york.
0 likes, 7 replies
amanda40 gracearnold12
Posted
there is treatment you can have to try n reduce it ask for prostap or zolodex is same thing but may have different name in USA?I've just had 6 mths of injections as they found it on my bowel. it seems to have cleared up the bleeding. I had stage 1v and had hystorectomy at36. I couldn't have kids because of it.had lots of surgery 13 laparoscopues 2 laparotomomies and total abdominal hystorectomy and a double bowel resection. it never goes away and its come back 16 years after a hystorectomy. which surprised the hell out of me. Good luck .
charlotte1824 amanda40
Posted
can i ask did you go on Hrt after your hysterectomy?
ive had 1 lap and now have endemetrioma cyst reoccurrence and the surgeon i met with has suggested an op for excising the endo and cysts with zoladex to follow and then a second op for a total hysterctomy with a bowel surgeon following with hrt.
im not sure i want the hysterectomy, ive read horror stories about the menopause and if endo just comes back im not sure what the point is.
amanda40 charlotte1824
Posted
Hi yes I've been on hrt since hystorectomy 17 years ago..infact just having it changed to progesterone and oestrogen as it should stop the endo from coming back. hystorectomy isn't a cure If you have it in bowel and elsewhere it can still come back. I had it age 36..but had no quality of life in constant pain in and out of hospital on morphine..it was awful so I don't regret having the op. just horrified it came back after 16 years!
charlotte1824 amanda40
Posted
Sorry you had to go through that.
I dont think my pain is bad enough to go through with the hysterectomy. Ive had agonising periods since i was 13 so its just become part of life but my excrutiating pain is only for about 3-4 days and nights, after that ibroprufen effectively manages it. Then ovulation and the week prior to period are uncomfortable, a nagging pain but not doubled over in agony. I wee alot and have lots of ibs type symptoms all month but again i am used to both.
The specialist i saw said that untreated the pain is likely to become more daily and chronic and the insides will become a mess and make future ops harder but i really want to ride it out until closer to natural menopause age.
Have you had any complications due to tour surgery. Atrophy/prolapse, mood problems, weight/skin/hair changed, heart/bone issues.
amanda40 charlotte1824
Posted
Hi
I had horrendous sweats which I thought was because I was on a plastic bed..turns put when they whip your ovaries put you go into full blown menopause. I cried a lot too. I tried pulls lotions sprays and settled with patches prob took 2 years to get symptoms to settle down. I had weight gain..what they used to call middle age spread.. again if you are able to exercise and watch diet it shouldn't be too much of a problem.i was measured up for a colostomy bag prior to surgery which terrified me..I nearly went home! He came to see me and told me because it was in my bowel it was a possibility he couldn't save it.i was single and scared to death. as it was I didn't need it. but suffer probs with constipation n the opposite all the time. I've had 2 heomoriodectomies also which is the most painful op ever. my hair falls out but that could be getting older I'm 53 now. I had no choice in the end.. ovulation pain brought me to my knees..periods were horrific and heavy for 8 days...then I'd start ovulation again..it became impossible to function. I now have herniated discs in my neck and constant headaches n migraines which I'm having injections in my head in next week. I gave osteoarthritis in my lower back and was diagnosed with cfs/me and fybromyalga 9 years ago..I take a lot of pain meds. my body has had so much trauma its not surprising really. hope u get sorted..i hung on as long as i coyld andwent on ivf waiting list..but i couldnt take anymore pain...i now have 13 cats!! don't end up like me lol..ask about zolodex..side effects were ok..I didn't feel any worse than I normally do on a daily basis and it cleared up the hematoma and stopped the bleeding. I had 18 mths of them prior to hystorectomy too...surgery can make it worse as adhesions and scar tissue can start bleeding making endo worse. x
charlotte1824 amanda40
Posted
Oh Amanda, you really have been through alot. Sorry for you for all of that, it sucks what our own bodies can do to us.
Thank you for sharing your experience, hrt seems to be tricky for people to get right. 2yrs is a really long time to go through uncomfortable emotional and physical symptoms before finding some relief.
ive already gone through many years of joint and muscle pains which couldnt be explained so the thought of the surgery resurfacing that is not worth it to me. To be honest just the cyctectomy is a concern as i feel like they will likely take my ovary as a precaution and the other one is only just hanging in there from previous surgery.
The colostomy bag comment would have had me running for the door too. The surgeon said sometimes they use a temporary one if they operate on your bowel but even that seems life changing.
Thank you, this has helped me make up my mind which has been wavering between the choices.
aitarg35939 charlotte1824
Posted
Charlotte, i have a slightly different experience with a hysterectomy and just sent you a private message about that.