Hysterectomy

[EmaEndo]

Hello,

I was diagnosed with endometriosis and uterine fibroids in 2017. I was sterilized during my section with my 3rd child in 2014. I always suffered from heavy periods as well as severe pain and for a long time was fobbed off and told this was normal. After the birth of my 3rd child I seemed to struggle more with the heavy bleeding/abdominal pain, it was so bad I had to wear tena pants as I was flooding through my tampon and pads within half an hour and using the pants saved me from any leaking moments. In 2016 I was in so much pain my husband took me to the hospital where they diagnosed a hemorrhagic cyst and sent me home with painkillers. This put the fear in to me as my sister had ovarian cancer and in 2007 I had my right ovary removed due to a large cyst on my ovary (it was size of a golf ball) but thankfully it was not cancerous.

After what felt like forever I was seen by my gyne (he was one who also removed my cyst) and done scans and told me I had Pelvic Inflammatory Disease, uterine fibroids and endometriosis. As I was complete with my family, he booked me in for a womb ablation and confirmed I was also severely anemic.

After this I was still having heavy bleeding but it didnt feel quite as bad as before...that only lasted for 6 months. I went to see him again along with getting my regular smear which came back as high grade, so had to have cone biopsies to remove the pre cancerous cells....so far everything is looking ok there.

At my next appointment with him, I told him I was still bleeding and he didnt believe me but once he scanned me it confirmed (I was on a tablet to stop the bleeding...it began with No ....I will find this out) and decided to put me on Decaptyl injection and Tibilon HRT.

This was great as it stopped the pain as well as the bleeding, i felt like a new woman! But i was only allowed to be on this for a year and it caused serious weight gain for me.

Now i am off this and of course the bleeding and constant pain has returned and he has agreed to give me a hysterectomy...which i desperately want, as like i said i have completed my family. He stated hes at the bottom of the barrel for options now and only thing left for me is a hysterectomy....but theres a but...

Due to having the cyst removed in 2007, i was cut above pubic bone, similar to a section for this operation. I then had a section with my 3rd child which was very complicated and I lost 2litres of blood during surgery, had to have a transfusion, they had my insides pretty much out side (my husband said it looked like a massive jelly tot sitting on me) and they had to cut along my previous scar and also extend it so I'm cut hip to hip.

Due to all of this, he is reluctant to operate due the severity of my section situation, he cant do the hysterectomy keyhole or vaginally as the fibroids are too big apparently so only way is cutting my tummy open for a 3rd time.

But with all of that, he wants me to lose 2 stone (what I put on with being on the injection and HRT)...

Has anyone had something similar happen? Is this them just trying to get out of doing this? I just feel like I'm getting excuses, feel like I was getting somewhere and they throw the weight card at me.

I just feel at a loss. I'm trying everything to lose weight but it's not shifting and despite him saying once I've lost the weight to call him and he will book the surgery, I feel I will then be told some other excuse not to do it.

I just hate living like this...its soul destroying mentally and physically, I rarely go anywhere due to pain and fear of leaving a blood trail behind wherever I go...

[Lovepenguins]

Hi there I'm so sorry to hear how difficult it has been for you. I'm 31 and have suffered with Endometriosis for 20 years. The last year it became unbearable and I too felt that awful hopeless how can I live like this any more feeling. I had a laparoscopy and they discovered it was now stage3 Endometriosis on my pelvis bladder bowel and rectum. I was heartbroken as the pain has returned and I am now on the mirena with pre gablin for nerve pain. A hysterectomy would be ideal to stop bleeding - I too am on norithisterone if that's what you have? I was in medical menopause which I felt so isolated and again the pain was unbearable do for me a hysterectomy wouldn't work. I think it's upsetting them saying to lose weight as Endometriosis and treatment can put weight on which you need to manage your symptoms but there may be risks associated with surgery if you don't lose the weight? Could you get a second opinion or talk to your gynae again? Really hope you get somewhere soon and stay strong, if literally can be getting through one day at a time. Counselling may help too and speaking to people with the condition so you're not so isolated. Xxx

[Marcia71]

A hysterectomy won’t necessarily help. It certainly will if you’ve adenomyosis which causes heavy bleeding but unless endo is properly excised at the time it will keep growing and keep causing pain.

Re weight I can’t help thinking it’s an excuse. I’ve had loads of problems with endo, adeno and menopause and put on 4 stone. But my last surgery was done without it being mentioned. This was to excise endo from vaginal vault and I too was warned it may be open surgery but was done via keyhole. It was done at BSGE clinic and I therefore think it’s more about skill of surgeon than anything else. If you’re not you qualify for referral to BSGE centre so get there for a second opinion. Good luck.