Pain four months post hysterectomy & oophectomy

[1Poppy1234]

I had this in sept started earlier in the week with low period type pains which got much worse hurting when I went to the toilet awful pain had to take morphine to cope. Not hardly moved all day so exhausted and scared it will come back. Has anyone else experienced this?

[Hannah818]

Hi sorry to hear, not sure if this helps but I get pain before during and after using the toilet and mri showed endo, adeno with bowel/rectum involved, also feel pressure on bladder. Maybe go back to doc and ask for mri?

[Endominas24]

Yes. I had TH and BSO due to severe endo and have pain with loo activity after 3 months. Maybe early days after such a major op and also have chronic fatigue. Exhausted and scared is something I empathise with. Nobody wants to go back for invasive medical interventions. Maybe get checked out by GP in case a referral back to surgeon is advised. But bear in mind that the nervous system and hormones are also thrown way out of balance so there must be so much tension and pain which comes from the trauma of surgery itself. It takes many months to heal. You’re not alone. Holistic trauma therapies and alternative approaches tend to shine for ongoing issues and wellness - once the acute surgical interventions are done.

[1Poppy1234 in reply to Endominas24]

Thank you for replying I've got crystals for anxiety as I'm very much not going to take hrt in case the endo starts again. I really don't want anymore surgery. Do you recommend any alternative therapies for this? I'm going to go to the Dr tomorrow hopefully to try to help. It's just so uncomfy.

[Endominas24 in reply to 1Poppy1234]

That’s good if you can get checked over - the doctor should palpate your abdomen, sometimes they don’t bother but it is important. Regarding alternative therapies, I used to control my endo pain through Traditional Chinese Medicine. I am returning to herbs and acupuncture myself, now I am out of the ‘risk zone’ from surgery. (For acupuncture make sure they are on the British Acupuncture Council member list and herbalist are registered rchm.co.uk)

But I’m also very interested in trying an ashwaganda/maca/saffron/sage + blend that I read about for all the menopause symptoms that come part and parcel. It seems promising- I’m looking into it but looks expensive: Aeons.com total harmony blend. I checked out the Doctor/nutritionist Sarah Brewer- she is on the gmc-uk. It caught my attention because my herbalist is Japanese and she told me Japanese women don’t have these issues - this is what Dr Brewer said as well.

I hope that helps or reassures you - as long as nothing serious is going on there are other options - but obviously they are private treatments. I’m hoping for a holistic journey now - so fed up and traumatised from invasive measures.

[1Poppy1234 in reply to Endominas24]

Thank you so much for your help it's very kind of you. I will look into all that.

[Endominas24]

All the best. I hope all goes well with your appointment.

[Marcia71]

it sounds like all the endo wasn’t removed at hysterectomy. And that is causing bowel issues. The inflammation endo causes is linked to ibs like symptoms. And why so often we are told “it’s just ibs”. When in fact it is endo. If you’re on HRT it must be combined (oestrogen and progesterone) even after a hysterectomy due to being an endo sufferer. It’s in eshre guidance but many doctors don’t know this.

[1Poppy1234 in reply to Marcia71]

I'm not taking hrt as I'm too scared of it causing the endo and adeno to work again. Thank you for answering.

[Marcia71 in reply to 1Poppy1234]

I can understand that. Combined hrt is best if you ever did want to try.

Endo produces its own oestrogen. So can still cause issues after hysterectomy.

Hope you start feeling better soon.

[1Poppy1234 in reply to Marcia71]

I haven't read that is that right that it produces its own oestrogen? Since the hysterectomy I haven't had any migraines that I had continuously before which is the only plus I've had. My stomach is still swollen and it's still sore ISH. I'm trying to be positive as I was in so much pain before the hysterectomy but I'm still swollen still uncomfy and feel my body still follows a period which is strange.

[Marcia71 in reply to 1Poppy1234]

No you have read it right. Endo produces its own oestrogen so can keep growing. And if it isn’t all excised thoroughly at hysterectomy it just keeps growing ☹️. I learnt the hard way as had hyster and ovaries removed by a general gynae who left endo behind and it just kept growing. He then put me on oestrogen only hrt - so that made things worse. Stopped after a few months when I learnt more on endo. But still needed 3 more ops after hyster to thoroughly excise all the endo he left behind and had just kept growing.

It’s a truly rubbish disease.

[1Poppy1234 in reply to Marcia71]

I'm so sorry you had all that, it's so hard isn't it. I thought my gynae might be ok he was a cancer specialist too so I thought he would be able to get rid of it all. At 51 they thought I should go through menopause and that would be the answer which I know now is rubbish. Thank you so much for your insight.

[Marcia71 in reply to 1Poppy1234]

So sorry you’re still struggling too. It’s truly rubbish. And most gynaes just don’t know enough about endo yet will tell you they do!! Happy to chat if you want any more advice or support. Take care x

[1Poppy1234 in reply to Marcia71]

You've been so kind telling me everything I didn't know about endo making its own oestrogen. Are you ok now? I'm dreading the thought of anymore ops I've already had ruptured ectopic second ectopic emergency c section gallbladder hystoscopy and biopsy and now hysterectomy I just feel exhausted with it all and you have to fight so hard for everything don't you. I'm dreading the Drs as when I was struggling to get diagnosed they didn't know what to do with me and then I will be going again. It's all just horrible isn't it.

[Marcia71 in reply to 1Poppy1234]

Yes I am finally doing well and out of pain. It’s 10 years since my Hysterectomy now. And 5 years since my last op. Those 5 years in between were horrid. And caused me to suffer PTSD as was so awfully treated by many medics.

I hadn’t been diagnosed with endo until I was in my 40s as no doctor had listened. When I finally found an endo specialist who listened and was kind and really knowledgeable it made such a difference but I know those people are rare.

It’s totally exhausting having to always advocate for ourselves. And wears us out. But unfortunately is the only way to get the right help and the help we deserve.

[1Poppy1234 in reply to Marcia71]

That all sounds awful but nice that you are finally ok. 🤞It was weird the week before to wipe when I had a wee was uncomfy but I just used the cream I used before we had a hit tub lodge weekend away and since then I've been steadily worse running to the toilet liw period pains till last week then awful pain resorting back to morphine. I really appreciate you replying as I'm at my wits end with it just want to sit and cry. 😕

[Marcia71 in reply to 1Poppy1234]

Sometimes sitting and crying is the best thing to do. Doesn’t change anything but helps us to get it out of our systems. Take care and hope you get some help soon. And do by all means drop me a message anytime xx

[1Poppy1234 in reply to Marcia71]

Thank you so much. X