I read a lot but get conflicting answers about what my doctor suggest.I was diagnosed 7 months ago

I read a lot but get conflicting answers about what my doctor suggest.I was diagnosed 7 months ago

So 7 months ago I got a 2nd opinion about my severe stomach pains (I thought it was kidney stones it is that bad) .But I ended up finding threw the belly button surgery that I had stage 3-4 endometriosis.She said my ovaries were impacted with scar tissue from repeated ruptured cyst.She burned and scraped everything she could visually see out .They never followed up afterwards with the lepron shot which they never did .So the pain started coming back about 4 months after the surgery.Only more extreme so now she wants to do a full hysterectomy.She said without a period or uterus it wont be able to get this bad.I belonged to a facebook page for 1 day they all said it was stupid there is no cure (which I knew) and that my Doctor is stupid and I will forever be in this same pain no matter what.I left that group as they were not very sensitive to what I'm going threw,even if that is true.I do know it went to my intestines and stomach so it spread further then my uterus.But also it says that is what it is it grows outside of your uterus.So my question is .Me having a hysterectomy should I be optimistic at all or is this just a unnecessary surgery.I do not have no plans of ever having another child.I have been blessed with a daughter. I got pregnant when I was told "I could never have a child".I was overjoyed and very happy with the fact that i had a baby against all odds.I have SLE lupus and other medical problems that are painful and hard to carry a child with.I was on bed rest the whole time and even though I do have many happy memories it nearly killed me.I would adopt anymore children if I wanted to raise more, whether I have this procedure or not and the reason why is I need to be alive and be able to care for the child I have she just turned 2 on the 24th.I love children but I'm 32 one is enough for someone with limitations because of medical problems.I know my husband and I both do not want to have anymore as the pregnancy is very bad for someone with my conditions and adoption is a wonderful thing to do if we wanted we always have that option always.Dropped a photo of my daughter and I on my wedding day just for some light to this post.

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  • Hi Sarah , you are right to be cautious about having a hysterectomy. With severe endo even if you had both ovaries removed it is still possible for endo to sustain itself. It can produce its own source of oestrogen.

    Were you treated in general gyne or at a BSGE centre?

    Severe disease should only be treated by the later under NHS guidelines.

    If you are under a general gyne I would suggest having a look on the BSGE website for a centre near you and tell GP you want a referral to them.

    They can then deal with the disease in the correct way, and hopefully give you some relief.

    Ps. Such a beautiful picture.

  • I have limited resources so I cannot travel out of state .I cannot find a local doctor within 2 hours from my house that can help.As far as everything I read its about having money to travel to a doctor who specializes in endometriosis and then having to be able to pay out of pocket for care.I don't have the money to do that .I have my insurance that makes me be limited to Ohio only.And this doctor is the best 1 Ii can find and its scares me that I will have this procedure and then it will be a long recovery and all for nothing.

  • Sorry I didn't realise you were in America. Good luck.

  • That is a lot of the responses I just want to know from women who have had a full one with both ovaries out if it helped them.My uterus is destroyed my ovaries are twisted.There is no way for things not to back up into other cavity's of my body .so even though i have to have it I just wanted to know if it helped anyone.

  • I had a hysterectomy and ovary removal along with excision just over a year ago. Unfortunately my surgeon decided to tell me after six months, when I said I was in a lot more pain than before, that he had not touched the endo on my bowel.

    I'm not on very strong pain relief along with laxatives that I never had to use before the op. I now also have a lot of pain in bladder.

    I know some women do get relief from having a hysterectomy, but to be honest with you , unless all traces of endo are removed at the same time there is a big chance you will still be in pain. Also being so young you will need hrt which will only fuel any endo remaining.

    Having said all that I really do hope you get some relief as I know how debilitating this disease is.

  • I have always had severe chronic kidney stones and bladder uti .I wonder now if a lot of my kidney pain I have been having lately is from the endo I feel that it is.

  • Could well be. Hope you can get sorted.

  • Thanks this just is a mess all of it there is no answers.Also I look 7 months pregnant and I hardly eat my boobs are huge like a pregnant person and I know I'm not because my husband and I have not been doing anything I have been in too much pain.

  • I know what you mean. It's even worse when all you've ever wanted was a child of your own and knowing that will never happen. There is a young girl at work who expecting and I swell up so much through the day I end up bigger than she is.

    This disease is just horrid. Plus women who don't have it can never understand what it's like for us and how much it takes from us.

    Try and stay strong and remember you are not alone .

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