Left my job due to surgical menopause/pelvic pain :(

[Mindfullness4791]

odifyRemoveTo cut a very long story short. I'm 50 had a full hysterectomy (including ovaries) in February and was put on Oestrogel 8 weeks later. I was told I needed to wait due to blood clot risk. I really suffered

Unfortunately my pelvic pain returned and my gynae diagnosed me with Endometriosis. My hysterectomy was for Adenomyosis and large fibroids. She took me off of Estrogel and started me on Tibolone. This worked slightly but I still had anxiety, skin rashes and generally not feeling great.

In September I saw a menopause specialist who switched me to Lenzetto and Progesterone. I have felt so awful that I've stopped this and now on Estrogel and Progesterone pessarues . My anxiety is still through the roof.

After my hysterectomy I started a new job, which was my dream job. I've now had to leave as I do not feel physically or mentally able to carry on. My pains are deep and down my legsand the bowel issues are ramping up and the rectal bleeding is back. I had a sigmoid recently that showed no abnormalities

I've never felt so scared, vulnerable and alone. This is following 3 years of crohnic pelvic pain. Ive had an mri and lap that were negative for endo.

I just don't know what to do xx

[TennisAM]

Hi I'm sorry to hear this. Did you have a diagnostic laparoscopy with an experienced BSGE endometriosis specialist (if you're in the UK?)

A sigmoidoscopy cannot rule out bowel endometriosis. Also unfortunately depending on the skill of whoever did the diagnostic laparoscopy it's possible the endometriosis could have been missed. MRI scans can only show obvious endometriosis (5mm or bigger) and it can be as low as 60% accurate to see the disease.

How many incisions did they make across your abdomen when you had the diagnostic laparoscopy?

Did they tell you where they checked for endometriosis in your abdomen?

You can seek a second opinion from another endometriosis specialist doctor to see if you do have it. It very much sounds like you may have endometriosis.

Has your GP done a calprotectin stool sample test, to check for IBD?

[Mindfullness4791 in reply to TennisAM]

Thank you for your reply. No, it was a general gynae, who was so awful I need to put a complaint in. There were 2 incisions. My belly button and left ovary area, where the most pain was. They didn't tell me where they looked. I've had a faecal calprotectin, m,s & c and fit test. All came back normal.I am waiting to see a bsge specialist xx

[TennisAM in reply to Mindfullness4791]

Hi, sorry to hear that. For information a minimum of 4 incisions are needed to check the whole abdomen properly. Send me a private message if you'd like names of which bsge surgeons to avoid. Unfortunately not all are good at thier job. Best wishes

[Thistlegirl49 in reply to TennisAM]

I had only 3 incision's for emergency appendectomy (had rare endo’ of appendix inside and out) and they were able to do a thorough job and see bowel endo, cysts, peritoneal cavity etc etc. At surgery I was finally diagnosed with severe endometriosis after 8 years going back and forth to my GP.

I’m now in care of my local hospitals specialist Endo team and recently had a horrendous flare up, having been ok for 18 months since laparoscopy, but recovering now and I’ve come off ALL hormones/injections etc.

[TennisAM in reply to Thistlegirl49]

Do you mind sending me a private message of who the endo specialist is pls?

Glad you had a good experience but normally 4 incisions gives them the best chance to look around. The scopes aren't that flexible and the number of incisions also depends on which type of operation was done, a laparoscopy, da vinci robot etc and what they see. I needed 5 for my first severe endo surgery, for example. I was told they couldn't do the best job without the 5th incision.

Best wishes with your recovery

[Moon_maiden]

Hi

Sorry you’re going through all this.

Given other responses you might want to consider another lap with an Endo specialist, unfortunately a hysterectomy isn’t guaranteed to get rid of Endo pain. It’s also worth keeping an open mind about other conditions.

I was 51 when diagnosed with Endo, had fibroids, enlarged uterus,following that gallbladder and appendix out as well as adhesions. I think perimenopause triggers everything Endo/hormone related. I’ve found I don’t need HRT since, when I’ve tried it’s made things worse.

[Mindfullness4791 in reply to Moon_maiden]

Thank you. I've said to the professionals, I don't care what it's called, something is wrong. You know your own body! X

[BloomingMarvellous]

I can only say how sorry I am you are going through this. All the feelings are with you.

All of the above and insist on a proper BGSE centre sees you. I would consider once you've been assessed and cared for as you need that you look at the situation legally as to the prior care.

If you feel able to then going to the Guardian's article this week on Medical Misogyny they have a link to write about your experience as they try to put together a campaign to get us all better treatment and care. You can put your details in anonymously if you want x

[Mindfullness4791 in reply to BloomingMarvellous]

Thank you, that means a lot xxI need to put a complaint in, definitely. The consultant didn't tell me that I had a large fibroid, when he did the lap, as he didn't feel it was relevant. It just makes me think, what else did he fail to disclose. He was horrible I'm not sure where I stand legally.

I will have a look at The Guardian and link.

[BloomingMarvellous in reply to Mindfullness4791]

I would take professional advice on the legal situation but priorities have to be dealing with your current situation and awful painx

[Mindfullness4791 in reply to BloomingMarvellous]

Thank you 💕