Pain pain pain : I’ve had both my ovaries... - Endometriosis UK

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Pain pain pain

Sadnurse profile image
20 Replies

I’ve had both my ovaries removed due to reoccurring cysts....I have been on hrt for past three years..I’m 43...I’m getting deep right sided pelvic pain both mid cycle and when period is due...this can be crippling ...I keep having time off work when pain is so bad and as a nurse this isn’t going down well at work ...when the pain is bad I don’t know what to do with myself. I used to take naproxen but had to stop as had a gi bleed then I was prescribed nefopam which gave me swelling in my small bowel ....I feel like I’m always ringing gp and they must hide when see my number phoning again ...just want to be pain free and get on with my career 😞 can anyone suggest some decent pain relief etc

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Sadnurse profile image
Sadnurse
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20 Replies
Nikilll profile image
Nikilll

I saw your question you said both ovaries are removed. Now you have bleeding?. rheumatoid arthritis's pain killer tablet is the best pain killer.

Sadnurse profile image
Sadnurse in reply to Nikilll

I had both my ovaries and Fallopian tubes removed four years ago ...I’m on hrt but have periods don’t know if should or not but I do...I had endometriosis confirmed on histology but nobody told me ...just keep saying I have chronic pain blah blah ...now I get horrendous pain when I bleed and also mid way through the hrt pack...I was off work again yesterday and still in pain today right pelvis and lower right back ....I m just so fed up with it ...I can’t have naproxen cos I developed stomach ulcers which bled...they gave me amitriptyline but only 20mg x

Nikilll profile image
Nikilll in reply to Sadnurse

These are all happening HRT. HRT side effects are very painfull and tired. Take Esomeprazole (40mg) before food and after food take pain killer. Tablet is a medicine that reduces the amount of acid produced in your stomach. It is used to treat acid reflux, peptic ulcer disease, and other problems in your food pipe. It is also used to prevent and treat stomach ulcers. May I know why you are taking HRT now?

Sadnurse profile image
Sadnurse in reply to Nikilll

Because I don’t have any ovaries but I still have my womb

Bluesea7 profile image
Bluesea7 in reply to Sadnurse

If both ovaries are removed as far as know your periods stop, some people on hrt , it dont agree with them. Try and ask to see a nurse as they can be more understanding some times.

Bluesea7 profile image
Bluesea7

When both ovaries are removed as far as I know your periods stop .

Sadnurse profile image
Sadnurse

But cos I’m on hrt think that’s why I have a bleed

mrskiki profile image
mrskiki

I had the bi salpingo oophorectomy as they call it. Being older they didn't give me hrt after but the consultant said if I ever took it to make sure it was 'continuous' else it would aggravate the endo. They diagnosed endo during the op and I also have lots of fibroids still and I remember the crippling pain during periods so clearly. I spent 35 years with undiagnosed endo and ended up using my holiday to take a day off work during the worst pain every month. I wish I had gone back to the GP as I gave up in my 30s as none of them believed I bled excessively or was in extra pain. They just prodded my stomach and said they couldn't feel any cysts ... sometimes you get to see a locum or nurse and there is s chance they may have a bit more knowledge on endo.

Sadnurse profile image
Sadnurse in reply to mrskiki

Pain is horrible especially when not “acute “ as they call it and just finished you off...Sending you lots of love xx

CryBaby91 profile image
CryBaby91

Hey chick, are you using anything like heat packs, hot water bottles, heat pads etc? I find those really useful. Also a TENS machine may be of benefit for you, if you haven't tried one already? I wish i could recommend something that takes it all away totally but in my experience there is nothing that does, but a TENS and heat can be really helpful. I'm also on morphine and dihydrocodeine, but they are highly addictive and I only recommend starting that stuff if you're absolutely sure, coming off it is very hard and can be painful. Xxx

Sadnurse profile image
Sadnurse in reply to CryBaby91

I may have to tried tens do they really work?I just need something for the pain when it happens I don’t need everyday just when it’s at its worse ...

CryBaby91 profile image
CryBaby91 in reply to Sadnurse

They don't take it all away no but they kind of force your brain to focus on the sensation rather than the pain, if that makes sense? It's like having a massage, a nice distraction that just pulls your focus off the worst of it. Heat is amazing too, that's my go to for when it's really bad! I get my hot water bottle and my TENS, if that doesn't help then I take pain relief xxx

Hi lovely,

That all sounds really awful for you - and then struggling with work-absence-guilt as well 😔 as if you'd take time off for the sake of it - clearly you're a very committed person as it's bothering you so much. So sorry for all you're going through xx

Was there a reason they left your womb intact? It's pretty redundant without the ovaries. Seems as though it's just hosting whatever remains of your endo & causing you hassle throughout the month.

Is there any way you can have a full removal? There are lots of ladies on here who have had full hysterectomies & I'm sure there's a wealth of advice & support here.

Apart from what's already been said, heat packs might be helpful to take the edge off. Also a TENS machine could be a great pain distraction - apparently there are wireless ones available. It's the best relief I ever have & allows me to not be curled up in a ball on the floor.

All the best, keep us posted xx

Sadnurse profile image
Sadnurse in reply to PurpleSynesthesia

They originally kept my womb as we wanted children and ivf was being considered ...we decided against it in the end....now I’m 43 feel I’ve missed chance of babies so my baby is my beagle lol It’s just the pain ...I don’t want more surgery as I have extensive bowel adhesions everything is stuck to everything last surgery I needed a stent in my ureter ...

I’m a nurse and work 12 hours shifts lots of standing which does not help ...I want to progress at work and feel the pain is letting me down...all I need it something for when pain gets too bad so that I can stay on worn 😞

PurpleSynesthesia profile image
PurpleSynesthesia in reply to Sadnurse

I see, you've been through a lot already.

Have you looked into womb/ endometrial ablation/ cauterisation (whatever the current term is)?

I believe it can be done relatively simply - via the cervix & not needing any incisions. Perhaps that's something to consider talking to your GP/ gynaecologist about?

I hope you get some rest & relief soon, sorry I couldn't offer much practical help xx

Sadnurse profile image
Sadnurse in reply to PurpleSynesthesia

You have helped just by being supportive means a lot xx

Matthewanthony profile image
Matthewanthony

I’m sorry you’re in so much pain. I can’t begin to imagine. Opiates can work for pain… doctor’s are very hesitant to give them but if you only need it during when you bleed etc maybe it’s worth it? You won’t become addicted or dependant if only taking a few times a month.

Speak to your GP and demand to be understood. Keep trying different GP’s if they don’t understand. Someone else suggested taking the hrt without a break? Maybe worth trying? Good luck x

Sadnurse profile image
Sadnurse in reply to Matthewanthony

They are so reluctant to give me ...keep going on about addition and constipation...but I only need to keep me out of a and e as had multiple attendances when pain has been so bad x

CryBaby91 profile image
CryBaby91 in reply to Sadnurse

Have you tried the over the counter ones you can get? I used to get Solpadol which is paracetamol codeine and caffeine, you don't need a prescription for that :) xxx

Sadnurse profile image
Sadnurse in reply to CryBaby91

Yes tried it ...only a small amount of codeine in them ...tried ibuprofen with codeine but now can’t have ibuprofen due to my gi bleed 🙁It’s a nightmare getting to speak to gp at the moment and when I do I find pain isn’t as bad so don’t like to trouble them x

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