Endometriosis UK
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Not sure whether I have Endo- advice appreciated!

Hi

I wondered whether anyone would be able to say whether my symptoms sound like they could be endometriosis.

I have;

Episodes of crippling lower abdo pain that often leads me to pass out

Diarrhoea

Painful bloating

Horrendously heavy/lengthy/irregular periods

Extreme fatigue

Body aches (hips/groin predominantly)

Intense burning pain during sex which makes penetration impossible

Headaches/migraines

Lightheaded/dizziness

Nausea/vomiting

Brain fog

Unexplained iron, b12, vitD deficiency and neutropenic

I have been diagnosed with coeliacs and I am also milk free and soy free in an attempt to improve my symptoms but, other than stopping the daily diarrhoea, it does not seem to be helping my overall symptoms. I have also been diagnosed with ‘abdominal migraines’. No one can explain my ongoing symptoms. I am being referred back to haema and Gastro next month.

The more I read about Endo and other people’s experiences, the more I am convinced I have it. My symptoms often coincide with my period- yesterday I was violent sick for two hours (having not eaten anything that should trigger it) and today I have started my period.

I had a colposcopy in 2014 and some follow up ultrasounds so I am wondering whether, if I had Endo, it would have been picked up then? I have never been referred to gynae because of my symtoms, but it took me 20 years to be diagnosed with coeliacs so sadly I don’t have too much faith in the system!

I just wondered whether this sounds a familiar situation to what other people have experienced? Like coeliacs, I know Endo is another illness that can be undiagnosed for years.

Thanks

Kitty

4 Replies
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Hi Kitty,

I too am not entirely sure I have endo, but i feel highly likely! I do share some of your symptoms, and I do think there may be some dietary triggers, but to be honest I feel too exhausted to explore it right now. (Ive been stuck in a big flare up for weeks now and have my laparoscopy on Tuesday) I will definitely start keeping a diary and find out what it is if this continues.

I can't relate to sickness or the burning sensation you describe 😔 but near wnpugh everything else very intensely.

I thought i'd just mention that endo is often not detected on ultrasounds, so a normal follow up is MRI. Even then (like me) nothing may show up so eventually your gynae consultant will have no choice but to take a look inside to see what they're dealing with.

So keep pushing. I know its hard and you can feel like a stuck record but you need answers so you can get on with your life ❤

Xxxx

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Hi, I just wondered how you got on with your laparoscopy? Was it endo in the end?

Best wishes

Kitty

Reply

Hi Kitty,

I’m so sorry for the delayed reply. I haven’t been on here for a long while.

It took me a lot longer to recover than they suggested, and the very pain I went in to have explored was at its absolute worst for a couple of weeks following the procedure. I can only assume they had a good “squeeze” of everything while in there as they didn’t find what they were looking for.

I had my laparoscopy and was told I’m hunky dory inside with no signs of endo!!!!! So when I asked what the bloody hell it could be I was told Adenomyosis seems a likely culprit. They kept trying to tell me it’s non gynae related before the op, but in my beliefs we women know where our pain is coming from, and also bleeding from your foof sporadically is a tell tale sign it’s gynae surely 🤔

When I have looked at Adenomyosis it looks like basically endo inside the wall of the uterus. Everything makes sense symptoms wise. The doctor said he is quite confident that a pregnancy would fix it..(should have seen the look on my boyfriends face!) but I’m just not ready yet. He has also offered Zoladex injections...but they don’t come without sacrifice. I’m told they will give me menopause symptoms, mood swings, must be administered without fail every 28 days, and shouldn’t really be mixed with alcohol, and then trialled for a minimum of 6 months. (I’m not desparate for booze but I do like a gin and tonic every now and then!) Based on the above I’ve decided to wait a little while, and take the microgynon pill instead. It’s my mums wedding in 10 weeks and I didn’t want to be a grumpy menopause-like bridesmaid who can’t drink. Off the back of this I changed my diet to omit a lot of processed crap and massive increase on the organic stuff & veg, and have also taken up swimming as I thought this would be very low impact. (I used to be in real trouble with the pain if I tried walking too far etc) My pain hasn’t completely disappeared, I’ll be honest, but it doesn’t “put me on my ass” for days at a time anymore and I’m feeling so, so much better in myself. I don’t hurt after swimming at all. I’m fact I’m trying to keep an eye on pain triggers at the moment, and I think I’m seeing a pattern that processed sugar doesn’t agree with me (last couple of weekends I’ve treated myself on a Friday to a dairy milk bar and after not so long my ovary area pain flares up)

I think the pressure of the wedding has spurred me on to start exercise but I never thought it would be possible. As before I just accepted I was too ill to do anything. Very glad I started swimming, I don’t know if it’s the exercise or the diet that is having the greatest impact on what we think is “Adenomyosis” but I’ll certainly be keeping it up.

Are you any further along yet with getting some answers?

Xxxx

Reply

Hi, frustrating to have had the lap and it not be endo! Did it take a long time to recover from the op? How do they test for adenomyosis?

I had an ultrasound which should a cyst and I am getting my mri results later today. And then it’s deciding whether I have the lap or not. In the meantime I’m doing the same as you - diet and exercise!

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