sciatic endo

[Sickofthisshit]

Hi I’ve had a total hysterectomy about 5 years ago. Still have ongoing pains but have told because I’ve had the hysterectomy it’s no longer a gynae issue. I line in Northern Ireland and we have no endo specialist here. I’ve had bi lateral sciatic like pain and ongoing pelvic pain for about a year. I’m worried it could be endo on the sciatic nerve. Does anyone have similar symptoms? Thanks

[Emmaalfie]

I am going through the same thing atm. I had my surgery in July but it wasn’t by a specialist soon they only burnt what they could see and I know there is more. I’m struggling to walk on a daily basis now and use a mobility aid. I’m crying in agony everyday. Not sure if A&E will do anything as they haven’t in the past.

[Sickofthisshit in reply to Emmaalfie]

I’m so sorry to hear that. This disease is the worst! Can I ask if you are based in Northern Ireland too? I have every symptom of sciatic endo but they have refered me to orthopaedic consultant

[Emmaalfie in reply to Sickofthisshit]

No Manchester. I’m having all the same symptoms. It’s awful. I don’t think people realise how life destroying it is. I can barely walk some days and I’ve tried everything. I really want to see a specialist now. I find a lot of male doctors fob you off so it takes longer to get taken seriously. You really need to advocate for yourself and stick to your guns. Also learn as much as you can because not all doctors know the signs and symptoms. Keeping pushing what you know is right X

[GreenQueen92]

I recently found out you are allowed to ask to be referred to any nhs endo specialist you like. However, it’s best to give your gp the specific doctors name and the hospital they work at.

And obviously you really have to push for it. Remind them you have an incurable condition and that you know the waiting list will be long.

All you need to do is google nhs endo specialists, unfortunately there aren’t many of them.

Good luck x

[JOSANDY40]

Sorry to hear this. Unfortunately having a Hysto doesn't stop Endo, also you will have scars and nerve damage due to the operation. Endo is often on the bowel and bladder foe stage4 Endo. All the way through my Endo I have had sciatic pain by walking. It is often the case Gynae are behind with updated info about Endo. Staying away from certain foods may help that contain Histamines or Estrogens. With age also the damage caused by Endo can cause effect the bowels way of working/ emptying this can bring sciatic effects.

Then of course on the very negative rare thought having a Hysto doesn't stop Endometrial Cancer which is 8 times higher than someone who hadn't had Endometriosis and you may perhaps who have family members with other cancers as I do.

I would see a different Specialist regarding Endo for both MRI for the cavity including bowel and bone density.

Gentle stretches for back pain across the pelvis. Laying on back then bringing up each leg in turn towards the face using both arms behind the knee to hold the stretch a few second then lower leg slowly perhaps with the aid of arms. Repeat other leg. Start perhaps with 3 a side per day. After a week start building to 5 then to 10.

There is also a possibility that the muscles in your back and thigh on one side are not aligned so a chiropractor might be helpful.

Take anti inflammatory pain killers anyway.

Certainly don't leave this.

My best.

[Snowwhite2207]

Hi,

just wonder ...did you ever tried women's health physio specialist? They do help with that kind of thing, especially after hysterectomy. Doesn't matter how long ago.

Hope you get sorted. Feeling your pain. I had some horrific tail bone pain and sciatica before my hysterectomy - thank God it's all gone after surgery. They said I had and endo nodule near my tail bone ,which caused me my tail bone / sciatica pain. And that was removed by my surgery. He took all my endo out thank God !

But I believe women health pelvic specialist physio might help to you navifgate you in the right direction as to what to do about it.

Good luck xxx 🥰

[Charlotta00]

Hi , I'm exatly in the same position ! Had pain in my legs since my last surgery last December! Got given amitriptyline, started with 10 g , got used to that and the pain return, up to 20 , pain returned, countined like that and now up to 50g and I can barely walk ! Got an Mri in October! I guess it's nerve damage, but I got no idea how they will treat it ! Seems like so many of us are struggling with it ! Is it actually some treatment for it ?