Possible Hysterectomy at 42 as feel everything else hadn’t worked

[LK20]

My first time posting and really sorry for the long post.

I have been struggling for the last 13 years, I’ve lost all of my thirties to pain and discomfort. My first laparoscopy and helium beam treatment back in 2011 they detected peritoneal pocketing found in the left uteri- sacral ligament and left ovary. I still experienced pain and exhaustion so was referred to rheumatology for chronic fatigue and fibromyalgia which they diagnosed in 2013.

In 2014 I started first treatment of zoladex and HRT and was put on this for 12 months, it was awful and had different HRT as I suffered with side effects and migraines I then stopped this. We then tried multiple different contraceptives pills I was still experiencing lots of pain, fatigue etc.

We carried on back and forth until 2017 where I had another laparoscopy's and which they found some spots on my left ovary they also carried out a smear and fitted me with the coil. The coil didn’t last that long as it really didn’t agree with me.

I have since had two ultra sounds both clear and three lots of prostrap. I got lost in the system to covid so recently had to start all again.

New lady consultant was awful and ended up coming out of the appointment in tears. She can’t understand why I have been given a diagnosis of endometriosis and can’t understand why I am in so much pain and discomfort. She think I still want children even though clearly told her I do want any as some days I can’t even look after myself.

she was only bothered by smear test and nearly had to peel me of the ceiling as that bad as I have a tilted womb

She also didn’t want me on prostap any longer than 6 months until I reminded her no one was bothered during lockdown when I was on it for 16 months.

A hysterectomy has been mentioned by previous consultants but this one isn’t keen . Would this surgery really help me as I’ve not got much more to give and feel like I have certainly tried all options.

If you have read this far thank you and appreciate any advice

[Purplerain12]

sorry that you’re struggling. I went on zoladex for 6 months after I had an endometrioma rupture and lost my ovary. I didn’t find it massively helpful but I think that was more that I was trying to do too much post surgery. I have since had a total hysterectomy including my remaining ovary, endometriosis removal including shaving it off my bowel. I am on hrt. Although I’ve had to accept that I can’t do as much as I could and I’m lowering my hours at work, I am much better. Do you have endometriosis and have your consultants been from BSGE centres? I’m lucky that my local hospital has a good one so was able to access specialists. I think you can request to be referred to one if not.

I continue to have problems with my bladder and bowel and some pelvic pain so it’s not a cure all situation. Things that I find help are the boring things like gentle exercise (I walk/ swim), eat lots of fruit and veg (I also take fibre sachets and drinking the right amount of water (too much makes my bladder worse and too little affects my bowels).

I’m happy to answer any questions you have if I can. Best of luck x

[LK20 in reply to Purplerain12]

Hi,

Many thanks for replying

Yes I have endometriosis but my latest consultation can’t understand why I have this diagnosis as it only shows spots. But I have horrific pain, exhaustion and heavy periods.

The prostap does seem to help but takes at least 3 months to settle down but then stops working around a year in, I then end up with more side effects and always end up having a break for 6 months and then trying it afai. I’m wondering if I do accept the hysterectomy will this actually help and take all the pain away.

[Purplerain12 in reply to LK20]

A hysterectomy in itself doesn’t get rid of it. They need to do excision on the endo too. I had adenomyosis too so a hysterectomy does solve that. HRT will be a new battle to fight if you can take it but there is much more awareness out there. I had a great consultant who put me on it straight away so I’ve had it easier than some. X

[LK20]

Hi,

Many thanks yes already on HRT due to prostap as been on and off since I was in early 30’s now I’m 42.

I think because it was found in my sacral ligament nothing really shows up on scan and only have a few spots when I’ve had the laparoscopy .