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Endometriosis pain post hysterectomy

Posted , 2 users are following.

Mel05
Mel05

I am so frustrated.

I was diagnosed with endometriosis and PCOS when I was 19 and after 7 laparoscopies, 2 chemically induced artificial menopauses and a ridiculous amount of weight gain I had an (almost) royal hysterectomy at age 36.

I had always assumed that the hysterectomy, although final in so many ways, would mean the end of all the pain too.

How wrong could I be?

It's been 2 years since my big op, I now have the most horrendous acne which is scarring my face, vaginal dryness, and the pain is back to pre op levels.

Sometimes I almost wish for a period so I'll have the sense of the pain almost leaving my body.

I also have Bipolar Disorder and the medication means I am not able to take any pain relief other than cocodamol, which is close to useless.

The acne requires a medicated antibiotic cream, the dryness needs a pessary which had led to almost 2 stone in weight gain in 2 months, plus psych meds, anti anxiety meds, HRT, Iron tablets (I'm flipping anaemic too), anti spasmodics (IBS) - I'm just so fed up of it all.

Will the pain ever really go? I mean properly go?

My body is disfigured with the rapid weight gains and losses over the years, not to mention the scars and the 2 inch deep belly button, but if I could get rid of the pain I'll accept anything else!

Has anyone else found a way of reducing pain post hysterectomy? Please?

0 likes, 4 replies

4 Replies

  • Mel05
    Mel05

    Posted

    * total hysterectomy, not royal!

    And almost as my cervix was too badly adhered to remove it.

  • maria7800
    maria7800 Mel05

    Posted

    Similarly I have also been suffering post-hysterectomy though this took some time to return (about six years).  Unfortunately I am simply taking a combination of drugs but given your other conditions I can see why you're having trouble. Have you contacted any specialists who have long-term experience, such as those in Oxford? Send me a PM with your area and I might be able to assist with finding a specialist.

    I really just wanted to say you're not alone though, it's difficult particularly when other conditions (whether physical or mental) affect your ability to manage one health problem. I know when I was undergoing IVF treatment, this aggravated the endometriosis which caused increased pain and bleeding! It's a nightmare that's for sure.

     

  • Mel05
    Mel05

    Posted

    Thank you so much for your reply maria7800, I was beginning to lose faith!

    I live in Glasgow at the moment, but have lived in England Soctland and Wales and seen consultant gynacologists in around 7 hospitals over the years due to moving home and consultants referring me on, so not sure if anyone will say any different - but there's always a chance!!

    I actually went private for my hyserectomy as I had insurance cover through my employer at the time, and I also saw a private specialist in Reproductive Medicine before I agreed to the op.

    I hope your meds are keeping you comfortable without adding any further complications, and again, thank you x

  • maria7800
    maria7800 Mel05

    Posted

    I think it is hard for some people to respond to those who have other conditions, not least when it relates to mental health but I'm lucky having not only worked with but also had depression - not surprising with this condition! There's a specialist I think in Edinburgh (private) if I remember correctly; I also visited the ERI but aside from providing stronger medication, that was all they did.  Send me a PM if you want to chat more and in private as some issues can be too personal for a public forum!! We can maybe exchange emails/facebook if you want to bounce ideas of one another! 

    Were you part of the OXEGENE study? The specialist team there (working out of Oxford NHS and Oxford University) are pretty good and they may have colleagues in Scotland who you have yet to work with. Again, PM me details as websites, etc. seem to be removed on public forums; happy to help if I can! I know how lonely this disease can be....!

     

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