Is it Endo? : Hi, I have suffered on and... - Endometriosis UK

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Is it Endo?

Luna07 profile image
5 Replies

Hi,

I have suffered on and off with period pains for years however June this year I started with what the GP thought was a kidney infection but was soon bed bound for a week and a half. Then July again had the same and they thought it was again kidneys, fast forward to end of September, I was more than 20 days late for my period, not pregnant however all urine tests came back with blood in urine which is why the GP believed it was kidney related however it always coincided with my period. I finally came on and was almost passing out and throwing up, in agony I ended up in A&E twice within a week to which I was told ‘maybe it’s a cyst hopefully it goes away’ and given codine. After the second time in A&E I was referred for a scan and given desogestrel to see if that had any affect.

The pain is always the same, in the lower right abdo, under ribs at the back on the right and general right abdo pain, and recently the pain has started to increase after going to the toilet for both 1 and 2. Again why the GP thought it was kidney related due to location of the pain. I had my referal scan yesterday and was told that when pressed on the right ovary didn’t move leading them to believe it was potentially attached to the uterus, which is over the area I get the pain. I now have to wait till feb for a gyno clinic appointment however even though I am still managing to do every day activities I’m still in pain, paracetamol isn’t touching it but I’m not in agony like I was, I am struggling to workout as it just seems to aggravate it.

Does this sound like endo? Does it sound like it’s affecting my kidneys/bladder too? Any tips for having to wait till feb? Any tips for getting into working out as it’s a big part of my life and I’m really struggling to do it

what do you think the next steps will be?

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Luna07
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5 Replies

Hi!It's hard to tell. Endo symptoms are pretty much non-specific. The monthly recurrence usually It's a red flag, even though for me I was in pain almost 3 weeks a month. Only way to know for sure is an mri with high contrast made by an endo specialist (unfortunately not everyone is capable of read an mri).

What tipe of training do you do? I'm also a very active person. I was running 5-7km but right after stopping I was getting terrible abdominal pain that made me almost faint. I went back to something less 'impacting'. Now I go to the gym and I bike.I lift 100kg no problem so the intensity is pretty high. Can't tell about HIIT. My feeling is that, as I had surgery and I've a lot of scar tissue if I do something that creates micro stretches of the organs I get inflammation again.

Let me know if you need more advice

Luna07 profile image
Luna07 in reply toEndoCoeliac_Woman

I’m hoping to get referred to an endo clinic to have more investigation. At the moment I’m just constantly having pain!

I’m very active, competing in boxing, running, circuits and weights at the gym, but at the moment I’m struggling to do any of these!

EndoCoeliac_Woman profile image
EndoCoeliac_Woman in reply toLuna07

I'm very sorry. I had constant pain before the surgery. Then they removed scar tissue over uterus and left ovary and then was way better. So you can 'hope' that they will suggest surgery. It's never good to have one, but I think it's advisable if the pain is debilitating. I'm very sorry that you cannot train. You probably are not the type that does yoga (I am not either), but try to do 10 minutes of mobility and breathing exercises before training. I always do that to help relieving the pain before starting to lift weights. You don't need to do meditation 😅. I do: inch warm, cobra, child pose, cat-cow, toracic mobility (gentle torsion). Basically think about mobilising your spine. That send releasing signals to the nerves that go into the visceral muscles and should reduce the tensions created by endo, reducing perceived pain (sport scientist speaking now).

Seems stupid when you're in a lot of pain. But for me was a game changer.

Luna07 profile image
Luna07 in reply toEndoCoeliac_Woman

Great Thankyou! I’ll definitely try it, hopefully it helps! Anything to get me back doing something 😂 I just hope to get a plan in place soon to help manage it!

EndoCoeliac_Woman profile image
EndoCoeliac_Woman in reply toLuna07

Good luck! Get back to us with your news 🥰

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