Apologies for TMI but need advice please - Endometriosis UK

Endometriosis UK

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Apologies for TMI but need advice please

Escapologygirl profile image
17 Replies

Hi just wanted to say I've learned a lot from you all and thank you but lately I'm noticing if I go to the toilet for a pee I suddenly out of nowhere can get stabbing pains in my right side bowel etc. Still have the pain now and only way I can get any relief is lying down. I'm also starting to feel the burning shooting pains up through me. Had an ultrasound last week and despite him pressing on the painful side he couldn't see anything no endo at all!

As I'm ovulating again for the first time in nearly a year I'm wondering is this normal?

Literally just finished my first period since May 2021 a week ago and gods the symptoms have intensified! Spent most of last year on hormone treatments which just did nothing except make me a depressed emotional wreck. I'm 44 and not perimenopausal but after last year of injections and the mini pill I feel like I'm an old woman

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Escapologygirl profile image
Escapologygirl
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17 Replies
EndoJaz profile image
EndoJaz

Hi I’m 46 and have had hysterectomy but ovaries still in, have had endo excisions but I get a pain on the right after eating and also if I have a full bladder. Been sent back to gp for bowel referral to check if endo on the bowel and on list for a bladder prolapse repair, I hope they will look at the bowel to check when they do the op. It’s awful as I feel very old too and can’t cope with all this pain and surgeries, gets us down at a time we should be enjoying life x

Escapologygirl profile image
Escapologygirl in reply to EndoJaz

Thank you so much for your reply and wow that's awful and I hope you're able to get some relief soon.

Yeah I'm beginning to suspect i need a bowel referral but how I'm going to get that in Ireland I don't know.

Heartof3 profile image
Heartof3

It's awful isn't it 😞 I'm the same with the burning shooting pains. I can't eat too much too. I have a scan in 2 hours & feel so nervous, coz we just want answers. But from what I've read on here, scans rarely pick up endo or scaring.

X

Escapologygirl profile image
Escapologygirl in reply to Heartof3

Thank you for replying and yes I've given up on scans I hope you're lucky

Heartof3 profile image
Heartof3 in reply to Escapologygirl

No, it showed nothing xx

Escapologygirl profile image
Escapologygirl in reply to Heartof3

Its so disheartening isn't it

Heartof3 profile image
Heartof3 in reply to Escapologygirl

It really is 😞 X

EndoJaz profile image
EndoJaz

Don’t give up, keep hassling the gps to get the answers, the only way to get a diagnosis is a lap. My gp told me I was still imagining the pain after the hysterectomy and to download a calm app and I kept fighting, had a lap and had endo excised even tho was told unlikely. I was so angry at that GP. Now fighting for bowel and it’s tiring especially cos I think I’m peri menopausal so feel so upset at times. Don’t ever give up tho xx

Escapologygirl profile image
Escapologygirl in reply to EndoJaz

Yeah I agree but sadly no-one in Ireland is willing to do surgery and only keep offering hormonal treatments

EndoJaz profile image
EndoJaz

It’s getting like that here too. I keep refusing the jabs as don’t want the side effects. It’s so u fair that we are treated this way and left in pain day in day out x

Escapologygirl profile image
Escapologygirl in reply to EndoJaz

Oh I was diagnosed with severe endometriosis in 2018 and since then they just keep offering me decapeptyl injections and the coil and its in my head just get on with it. Its so unfair that we have to keep fighting to be heard. Ireland is just ridiculous when it comes to female health

Jenova profile image
Jenova

I'm so sorry to hear this. I feel you. 1.5 years ago I took "Visanne" without a break for 6 months and I got almost all the side effects that could be, in addition, I got a subfebrile temperature, but this is not indicated in the side effects of the manufacturer. And I still feel old and ugly and disgusting. It's like these pills drank my life away. Because of the pills, I had suicidal thoughts, so my doctor canceled it. I am 34. My doctor is thinking about giving me the same injections as yours, but she doubts, she told me: "I am afraid that you will not be able to stand it either physically or mentally." I'm waiting for the consultation at the end of March. They will decide what to do with me. I'm tired and I'm scared

Escapologygirl profile image
Escapologygirl in reply to Jenova

Oh jenova I'm so sorry hon and thank you for your reply. You're so young to be experiencing this and yes definitely do not go on the decapeptyl injections or zoladex as it will set you back even further. Like you I have no idea now what is normal anymore or if being on those treatments exacerbated the endometriosis. I wish you luck.

Jenova profile image
Jenova in reply to Escapologygirl

Thank you. It's so hard being a woman... I hope you too will soon get better and the disease will stop developing. Take care of yourself, please

🤗

Escapologygirl profile image
Escapologygirl in reply to Jenova

Sadly true, I live in Ireland and female health issues are just not taken seriously but I refuse to give up. It had to get better.

Jenova profile image
Jenova in reply to Escapologygirl

You know, I don't think it depends on the country you live in, but on the people who work in this area. I'm from Russia. For several years of this hell, I met different doctors. These were people who devalued my problem, these were people who were indifferent, but more doctors, these are those who are really trying to help and are looking for options and ways to help me. Last Friday, I was with the result of a control ultrasound from my doctor and was unable not to cry. I received very emotional support, I did not expect this. She forbade me to give up and forbade me to think that I was an defective freak. She appointed a concilium. I think there are good doctors in your country who will not devalue your problem. Do not give up

Escapologygirl profile image
Escapologygirl in reply to Jenova

You're right but they're very few and far between. I have a great GP i found after 10yrs of being devalued as you say but a good gynaecologist is still hard to find here. Your Dr is right though never give up

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