Losing my marbles?!: I need some advice or... - Endometriosis UK

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Losing my marbles?!

Confused_con profile image
15 Replies

I need some advice or reassurance I’m not going insane! Since December I’ve been experiencing pain in my right side, originally the doctor thought it was a kidney infection and when antibiotics didn’t work I went to A&E for a scan only to be admitted for a week. While in hospital I had an ultrasound which came back clear for my kidney, liver and Gaul bladder. I’ve since had a CT scan which again came back clear even though my ovaries weren’t scanned, and the doctor has suggested it could be a pinched nerve or possibly endometriosis. I’ve had painful periods my entire life and continue to take my pill and avoid having a period, I’ve also had cancerous cells burnt off twice and I’m only 30, the first time it happened I was under 25 and had to fight for my smear test to be looked at, thank god or I may not be here today.

I am at my wits end, I’m sick of being in pain and I’m sick of constantly going to the doctors only to be given different pain killers from diclafenic to amitriptyline. Has anyone else experienced pain in their right side and been diagnosed with endometriosis? It’s only there the pain and sometimes it feels like my ovaries will explode around my period, my bowel movements are all fine and everything else is working fine I’m just constantly in pain. Any advice or words of wisedom would be appreciated, I’m waiting for a gynaecologist appointment but it may not be until May :(

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15 Replies
elisepalmer71 profile image
elisepalmer71

Hi there. You can have pain in one side from when you are ovulating but it could also be possible endometriosis on the ovary. Does the pain radiate to your right shoulder? I would just say that every patient is different but there are a pattern of symptoms with endo, so check that out on the website and go armed with that info. Take a look at some of my other posts that might help answer some of your questions but get back to me if not. Take care. X

Elise

Confused_con profile image
Confused_con in reply to elisepalmer71

Hi Elise,

Thank you for your reply the pain is in my right side and recently it’s now on my left side and it does feel like it’s on my ovaries. I’m hoping that the gynaecologist will be able to find something whether it’s endometriosis or not.

It’s a heavy pain and feels like something is twisting sometimes or like this morning it feels heavy and like I could bleed at any minute.

I just feel so blue and sick of being in pain and nothing being done as quickly as I’d like, it’s been going on since December and I’m so fed up :( x

elisepalmer71 profile image
elisepalmer71 in reply to Confused_con

Oh sweetie. That’s horrid for you. I can truly empathise. I’m also in a lot of pain at the moment from another health problem. So here are some suggestions that might help you. Try and distract yourself with a sitting down hobby, knitting, crochet, embroidery etc. then I find that the little things that bring me joy help lift my spirits. Like a nice smelling candle, or some flowers to look at. Especially when you are feeling low. Trying some breathing exercises and mindfulness as well helps you get through the difficult moments. I know some of this might sound trite but it isn’t meant to be, I’m writing it to try and help you come at pain from a different angle. I’ve done some other posts on medication suggestions etc that might help. But also reach out to me again if you need help. You are not alone. X

Confused_con profile image
Confused_con in reply to elisepalmer71

I appreciate your help I really do, I have started exercising again which does ease the pain but afterwards I am in agony.

Thank you again, your kind words mean a lot, I do feel like this is all in my head sometimes! xx

Clackson profile image
Clackson

Hi, yes I have right sided pain every single day. I have endo but they don't know what it is, I went to a&e on Friday, they did a CT scan, still waiting for the results. It's driving me crazy xx

Confused_con profile image
Confused_con in reply to Clackson

I had a CT scan at the beginning of February and they didn't scan my ovaries, it would be interesting to know if anything shows up on your CT scan.

How did they diagnose your endo? How are you managing your pain? xx

Clackson profile image
Clackson in reply to Confused_con

Hi, I've had endo for 30 years I'm 48, I had been on the depo injection for 17 years and was ok on that, then I changed to gnrh for a couple of months which also was ok, then the gyn decided to see how I got on without it. Well all the pain started again and the heavy bleeding, it took me nearly 3 years to get back on it, it was pure hell. I have endo on the sigmoid colon and also my uterus. Theses right sided pains have been everyday for about 5 months now, I've had a transvignal scan which was clear, so just waiting to see what CT reveals ( not holding out much luck) also been weeing all the time and needing to go a lot also pain and burning when going but there's no infection xxx

Confused_con profile image
Confused_con in reply to Clackson

Thank you for the response, its definitely reassuring that someone has is experiencing the same as myself, not that I wish pain on anyone.

I am waiting to see the gynaecologist which won't be until May according to my doctor, so fingers crossed I can move forward or start treatment for endo. xxx

Clackson profile image
Clackson in reply to Confused_con

I've got my fingers crossed for you. Can I asked do you have any bowel pain, I suffer with that on a daily basis, but don't have any trouble going xx

Confused_con profile image
Confused_con in reply to Clackson

I've got my fingers crossed for you too! No I don't have any bowel problems, thankfully, the pain is on my right side, they thought it was a kidney infection at first! And now as time goes on the pain is on my right and left side but mainly on my ovaries, as if my period is going to start but doesn't. Is that endo related? xx

Clackson profile image
Clackson in reply to Confused_con

Sounds like it could be,you get pain everywhere with endo. I see my consultant on the 14th march to see about surgery so finger's crossed for us both. If you can let me know how you get on. Sending you big hug xx

Confused_con profile image
Confused_con in reply to Clackson

Well I hope all goes well for you too, let me know how you get on too, take care and sending you big hugs back <3 xxx

Vickysponge357 profile image
Vickysponge357

Well this all sounds very familiar, except my pain is on the left. My GP first diagnosed a kidney infection as I am also sore around that area of my back and have blood in my urine but tests came back clear, then they said kidney stones. I rushed everything along by going to a&e after a day of excruciating pain and got a CT scan which was clear of stones, but a week later I had an ultrasound that had been pre arranged by the GP which they believed showed a small kidney stone but then said because the ct was clear then they believe that over the ultrasound and that everything else on the ultrasound looked fine.

This has been since the end of November and I am still having all the same pains now. Blood tests and stool sample came back abnormal but then repeat tests came back clear. The only thing reassuring me that I’m not crazy is that my urine keeps coming back positive for blood so I know it’s not all in my head!

I have my first gynea appointment in 2 week and I am also on a 2 week referral for a colonoscopy after the sudden appearance of some dodgy bowel symptoms that have concerned my GP so I’m just about keeping it together by the skin of my teeth at the moment!!

Confused_con profile image
Confused_con in reply to Vickysponge357

Its reassuring that I am experiencing the same process to yourself, not that I wish either of us in pain and both healthy!

When I was in hospital in December the doctor initially refused to give me a CT scan due to my age (30) saying the radiation would affect my fertility?!

How are you treating your pain? I am currently on diclafenic as amitriptyline did not agree with me at all, and did not even touch the pain as my doctor is playing with the idea I have a pinched nerve. I know my body and I am utterly convinced I have endometriosis xx

Vickysponge357 profile image
Vickysponge357 in reply to Confused_con

I know exactly what you mean. I wouldn’t wish this on any body but it’s nice to know that I am not alone!

Pain management wise I have cocodamol 30/50mg and i ibuprofen. It doesn’t get rid of the pain, but just makes me feel spacey enough to not pay as much attention to it. I’m hoping to talk to the gynea about trying something else though. I don’t like feeling so spaced out all of the time and it doesn’t look very good in work!

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