Unable to get a full hysterectomy.

[Kiz01]

Hi I was wondering if anyone is in the same boat as me. I am 43 years old and up until November 2022 had never received any procedure for my condition, I was disagnosed over 10 years ago and was given 3 options - the pill, a procedure that would remove endometriosis but I was assured it would come back again or live with it. That was the level of information I was given at that time and despite meeting 6 gynaecologists and 2GPS it was only last year when I met my 7th gynecologist and 3rd GP that the stars were aligned and I was finally listened to and taken seriously.

I'm currently in my 7th week post op, I went in to surgery on 25th November expecting to end nearly 30 years of pain, sickness and frustration by receiving a full hysterectomy only to be made aware when I woke up that this could not happen due to the significant presence of endometriosis. It was so packed in that my womb and cerfix was unable to be removed. The reasons for surgery are as follows.

1. Extensive Endometriosis.

2. Ovarian and cerical cysts, right cyst over 6cm and attached to right ovary which was filled with endometriosis and attached to womb.

3. Abnormal cells in cervix and high CA125 marker at 90, I have HPV which puts me at higher risk of cervical cancer.

4. Polyp.

5. Significant fibroids in womb causing bulky effect.

I made the consultant aware before the surgery that I had a feeling the endometriosis was in my bowel, this I was told was very aware. Carried out in the surgery successfully as follows (surgery by the way everyone and their granny were in as it was such a 'head scratcher')...

1. Left ovary removed and most of right ovary, part of right ovary was/is attached to my bowel.

2. As much endomotriosis that they clear - I'm still to have post op appointment with consultant so this bit is not clear.

3. All cysts and my cervix had a good hoover, with I assume a Dyson (I've not got a medical background).

My surgeon was incredibly supportive and I consider myself extremely lucky to have had such an experienced person looking after me, but as you will read the battle is not over.

Has anyone out there experienced this?

Also, sending huge love and thanks to anyone reading this. We do not have it easy and as footnote I was personally so pleased to read the Endometriosis UK had received funding last year to improve things for all of us who are continuing to suffer with this misunderstood chronic disease that so many want to ignore.

xx

[Pinkybow]

I have no advice to give you but I wanted to send you the biggest hug. Oh my you poor thing, your a real fighter 💛

[Kiz01 in reply to Pinkybow]

thank you for your lovely message Pinkybow

[AllthatGlitters]

hello this sucks, sorry to hear that news. I’m on list for hysterectomy and have been for 2 years now. I see you mention a bulky effect on your womb. Do you maybe have adenomyosis too? I have this as well as endometriosis. Also it can be extremely painful when I go to the toilet so sure I have endo on the bowel too. Do you get a lot of pain with going to the toilet?

Having these illnesses is so incredibly hard, sending you a hug. X

[Kiz01 in reply to AllthatGlitters]

hi, thank you for responding. I had a MRI end of 2021 along with normal scans and they’ve always said fibroids but I will ask. The pain I get is when I (#overshare) constipated and some pain when I go as the endometriosis is in bowel and top of rectum. At the moment I think I can manage it through diet but there’s part tired of managing pain I feel like I’ve done it my whole life. Best of luck and I genuinely hope that you get the treatment you need 💛

[Luc81]

Hi, I'm sorry for your struggle. I know it's awful. But I will give you advice, find endometriosis especialist from endo icarebetter list or go to Nancy's nook on Facebook, there is a list of great endometriosis doctors and lot of information. You can't just have operation from general gynecologist, they will not do thorough job unfortunately. They will not have the knowledge to remove everything properly and can make things worse. Trust me I know, had 3 operations to get it right. With the right surgeon things can can better.

[Kiz01 in reply to Luc81]

That’s dreadful, you should never of have needed to go through 3 operations, I hope that you are feeling better now x thank you so much for this, I think I will need to referred to multidisciplinary team too as it is my bowel. I’m still waiting for post op appointment with the consultant who carried out the surgery and will ask to be referred on as well as suggestions 💛

[Luc81 in reply to Kiz01]

I do feel better thank you. But took years and years of pain and suffering and nobody helped. You feel absolutely hopeless and alone. I had to search alone to help myself, its a lifestyle change as well. Every doctor says something else, the knowledge of doctors about endo is very general and sometimes they make things worse as I said. Doctors need to be properly trained for endo and also they need to work in teams of especialist because endo can be on bladder on colon etc...so to do good job you need someone who is fully experienced and trained for endometriosis and has his team. So hopefully they will refer you to good team. But do your research as well, it does help. I went to Prague private, but the doctor saved me, it was super hard operation, he also kept my uterus because I want kids still. I don't have painful periods anymore, I still can't believe it. 😊🙏