Hysterectomy

[Sarahkaye]

Hi ladies, has anyone had a hysterectomy because of pain? I have a tilted uterus and am convinced this is causing me my constant pain. I am going back to see go to get referral to gynaecologist and though someone would have been in this situation.

Any advice would be great,

Sarah

[confusedandworried]

Hi Sarah, sorry to hear you are in so much pain. Are you in the UK? If so it would be worth asking for a referral to a BSGE accredited endo centre if you have been diagnosed with endo. You can find a list of accredited endo centres at the following website:

bsge.org.uk

A BSGE accredited specialist is more likely to have the expertise to correct a tilted uterus rather than undertake a hysterectomy unnecessarily.

Furthermore if your tilted uterus is not solely responsible for your pain and you have endo than if this is not thoroughly excised at the same time you are likely to continue experience pain post hysterectomy.

I hope this helps.

Best wishes, Jo

[Sarahkaye in reply to confusedandworried]

Thanks for your reply Jo, I had a lap 2010 and they said there was no endo present, but I wasn't convinced. I have had severe period pain since early teens, Bowel problems and the doc kept saying its IBS, and Irittable bladder.

I have tried medina coil, postal and nothing has helped. I'm hoping for the doc to say I will take my uterus out and all will be ok!

Sarah

[confusedandworried in reply to Sarahkaye]

Hi Sarah, unfortunately it is possible that if your laparoscopy in 2010 was done by a general gynaecologist that he/she missed endo. In fact it was missed during my first lap in 1995! Unfortunately endo comes in many different forms and some general gynaecologists simply lack the skill and expertise to recognise endo let alone thoroughly excise it. Your symptoms do sound very much like endo and the tilted uterus can also be a sign (unless this is something you have had from birth). It's also sadly quite common for endo sufferers to be diagnosed with IBS before a diagnosis of endo is established. It's almost as if it's mandatory! Search this forum and you will see what I mean! I too have previously been diagnosed with IBS!

Obviously I hope you don't have endo on top of having a tilted uterus as I wouldn't wish it upon anyone. However it may warrant further investigation if it means possibly avoiding an unnecessary hysterectomy.

Best wishes, Jo

[Sarahkaye]

I'm convinced too Jo. I'm hoping I have more luck this time when I go back to the consultant! Thanks for your advice, Sarah 😁

[Tboag]

Hi Sarah, ive been diagnosed with ENdo and adenomyosis, and I also have a tilted wobm, I'm due to have a hysterectomy in 36 days I'm on countdown, as I can not wait, I'm in constant daily pain some weeks worse than others but always there, a hysterectomy will cure 2 out of 3 things so I'm hoping it will cure all my symtoms, but a hysterectomy will not cure Endo and like the ladies have said if any endo is present it needs excising, ive had mine excised during diagnos lap, but not by a specialist on bsge list, however he was a specialist in endo and laps, so I'm hoping he has done a good job, I feel no different but obveriously ive got the other things going on, my advise to you would be go back to your doc Gp, and ask for a referal to a bsge specialist, and they should check you out again for endo, and ask them about ADENOMYOSIS,

Good luck xxx

[Sarahkaye in reply to Tboag]

Hi Tboag,

Just googled Adenomyosis, thanks for that. sounds like it could be an answer.

I will mention to the consultant when I get there,

Sarah

[Sweetyassi]

Hi Sarah,

Sorry to hear that you are suffering with pain. I too was in a lot of pain. I had 4 operations and Endo was removed along with adhesions. But some Endo was missed in the bladder, bowels. I was in so much non of the doctors would listen or believe me. I had a hystercretomy done due to pain and bleeding but I Still had Endo. I had my 5th operation last year November privately and the surgeon removed all the Endo and adhesions where the previous surgeons had missed. I'm still recovering from my operation and have to say it's very strange not being in pain. I was so used pain everyday and now I'm looking forward to moving on with my life once I have recovered.

Hope everything works out for you. Be persistent with the doctors especially when they don't listen to you, you know your own body and how it feels to you not them.

Sweety

[Sarahkaye in reply to Sweetyassi]

Thanks sweety, I think you are right about being persistent with the doctor. I have given up with them over the years, but pain is making me have to go back!

Hope all keep well for you,

Sarah

[Sarahkaye]

Thanks ladies for all your replies, Its so sad to hear that so many people are going through the same things. I wish you all the best, Sarah