Severe Endometriosis Surgery

[Mary A]

Endometriosis is an awful disease. I had my first operation when I was 14. Total hysterectomy at 39 - best thing ever, no more daily pain!

[fissycist]

My daughter takes mefanemic acid for painful periods (she kept vomiting and was sent home from school regularly during her periods) Now the GP has recommended that she also takes Buscopan when the cramps are really bad.
Transamic acid is supposed to reduce flow. My friend and her daughter take both tablets to deal with both issues.
Hang in there. Unfortunately I think at the moment my NHS trust is only carrying out urgent mainly cancer surgery. Any major surgery which may need someone to need a stint in ICU or HDU is very carefully considered because of all the beds needed for COVID-19 patients.

[pinkcandy]

I’m so sorry you are struggling, I know how you feel, can you try and get a doctors appointment ASAP just so you are in the system? I know you might not get answers straight away but it’s a step closer. Hope you get sorted soon, take care xx

Originally Posted by cherub85

My sister does, it took ages to diagnose strangely and she was off work for about 6 months. They thought it was a problem with her hip or back, at one point investigating bone cancer. Then eventually realised it was gynae. She’s had a coil now for over 10 years and was fine. She’s just had it removed and been advised to take a break and is suffering dreadfully. I suspect I may also have some kind of problem as my periods are so painful, I’m often sick with the pain and I have flooding issues. It’s becoming quite difficult as I’m constantly worrying about flooding when out or at night on my bed. I must get some investigations done once Covid is over and it’s a bit easier to see drs! I take transamic acid which helps with flow a bit!

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[Gryff]

After suffering for years after our last son I knew I had to do something as days I knew I wasn’t fit to drive as I’d pass out with the pain never suffered heavy periods but just constant pain
So I went privately on DH health benefits from work had major surgery within 3 weeks
Lucky that they only has to scrape my organs and a hysterectomy never looked back
I know I was lucky as I had one of the best surgeons available at the time
You have to sometimes put it to your self do we goon holiday buy that new car decorate the house etc or spend the money to get life back especially right now because when this is over we’ve all got so much to catch up on
Just my view of course every one has different priorities
Just push push for treatment my surgeon was a fellow suffer and said if men had to suffer this a cure would have been found by now and that was 25 years ago

[pinkcandy]

Thank you Gryff, I’m so glad your OK now. Xx

Originally Posted by Gryff

After suffering for years after our last son I knew I had to do something as days I knew I wasn’t fit to drive as I’d pass out with the pain never suffered heavy periods but just constant pain
So I went privately on DH health benefits from work had major surgery within 3 weeks
Lucky that they only has to scrape my organs and a hysterectomy never looked back
I know I was lucky as I had one of the best surgeons available at the time
You have to sometimes put it to your self do we goon holiday buy that new car decorate the house etc or spend the money to get life back especially right now because when this is over we’ve all got so much to catch up on
Just my view of course every one has different priorities
Just push push for treatment my surgeon was a fellow suffer and said if men had to suffer this a cure would have been found by now and that was 25 years ago

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[Lisa123wm]

My 20 year old daughter was diagnosed with endo last year.
She’s suffered since she started periods, but the doctors kept fobbing her off and just prescribing codeine to take when needed.
Last year, just before lockdown she ended up in hospital in agony. This is what prompted referrals to get checked out and the diagnosis of endo which is quite bad.
She has been waiting for an op for around 6 months. When she last chased it up, all she got as a reply was, no idea when it will be due to Covid.
She ended up in hospital again last week with the pain and they’ve said they will ask for the op to be ASAP.

I really feel for you OP - seeing how my daughter is suffering I can understand what you’re going through.

Fingers crossed you get seen soon, and my daughter does too 🤞

[pinkcandy]

I’m so sorry for your daughter, I have everything crossed she gets the operation as soon as possible and she will be pain free and healthy again. Thinking of you both xx

Originally Posted by Lisa123wm

My 20 year old daughter was diagnosed with endo last year.
She’s suffered since she started periods, but the doctors kept fobbing her off and just prescribing codeine to take when needed.
Last year, just before lockdown she ended up in hospital in agony. This is what prompted referrals to get checked out and the diagnosis of endo which is quite bad.
She has been waiting for an op for around 6 months. When she last chased it up, all she got as a reply was, no idea when it will be due to Covid.
She ended up in hospital again last week with the pain and they’ve said they will ask for the op to be ASAP.

I really feel for you OP - seeing how my daughter is suffering I can understand what you’re going through.

Fingers crossed you get seen soon, and my daughter does too 🤞

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[wikkle jan]

My step daughter and my son have been trying for a baby for a few years but step daughter had VERY bad endo. It sometimes takes 7 years to get dianosed but luckily she did after about 3 years... She has been in pain for as long as she can remember and had first op about 3/4 years ago... They found 1 tube compleatly blocked and the other on its way to being blocked they managed to save 1 tube but then she had to wait to have the big op... Roll on the end of last year and she managed to get it done they like you thought she may need a stoma but although it was very bad and had spread thoughout her they managed without needing the bag.. This is an abridged version (so years inbetween) but she cant believe how pain free she is only problem is that she still hasnt fallen pregnaunt yet so will be trying IVF when covid calms down... She is a changed girl now she has no pain...

[pinkcandy]

Thank you for letting me know how successful your step daughters surgery went, especially that she is now finally pain free and doesn’t have to have a stoma, I wish them all the luck in the world to have a baby. Thank you xx

Originally Posted by wikkle jan

My step daughter and my son have been trying for a baby for a few years but step daughter had VERY bad endo. It sometimes takes 7 years to get dianosed but luckily she did after about 3 years... She has been in pain for as long as she can remember and had first op about 3/4 years ago... They found 1 tube compleatly blocked and the other on its way to being blocked they managed to save 1 tube but then she had to wait to have the big op... Roll on the end of last year and she managed to get it done they like you thought she may need a stoma but although it was very bad and had spread thoughout her they managed without needing the bag.. This is an abridged version (so years inbetween) but she cant believe how pain free she is only problem is that she still hasnt fallen pregnaunt yet so will be trying IVF when covid calms down... She is a changed girl now she has no pain...

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[lucylou]

I had a total hysterectomy in December after being diagnosed with Endo cancer in May. They first tried to treat it with hormone therapy but it did not have any affect. Before my op I read and googled everything and was dreading the recovery but after the first few days I was amazed at the lack of pain. Good luck if you have the op.