Advice wanted please: Can anyone advise me... - Endometriosis UK

Endometriosis UK

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Advice wanted please

Donnathomas profile image
10 Replies

Can anyone advise me if this is normal please my endo pain is normally really terrible to the point I pass out but it is normally in short bouts of a few hours to a day or 2 then I get some respite but for 2 weeks now I've had constant pain in lower abdomen lower back occasional pain in kidneys and every time I have a wee my lower tummy across my csection scar becomes unbearable I also have considerable swelling of my stomach and my weight has gone up 7.5lbs even though I am sticking to a healthy diet and actively trying to lose weight. I also have polycystic ovarian syndrome and coeliac disease and adhesions from having 2 sections and my right fallopian tube removed.

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Donnathomas profile image
Donnathomas
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10 Replies
Starry profile image
Starry

I used to pass out trying to go for a BM when my cycle was on before my excision surgery.

If its that severe I would push for a revisit to gynae to get checked out preferably a BSGE centre if your Endo is severe.

I wonder if it's adhesions from your c section tightening as they age. I believe umbillical and kidney Endo are both possible.

Donnathomas profile image
Donnathomas in reply to Starry

Thanks for your reply my last gynae visit was Jan this year he wanted me to have coil put in but I don't cope well with hormonal contraception so I refused so he discharged me he will not perform the ablation because I am 4 stone overweight I am desperately trying to lose weight and have lost 6 stone over the past 2 years but my medical problems are hindering my success and I struggle to lose even 1lb a month most months and quite often gain weight for no reason so I am gonna have to suffer for a long time till I can get this extra 4 stone off so he will help me I am at my wits end

Starry profile image
Starry in reply to Donnathomas

I can't imagine having celiac disease can make dieting easy.

I've been told to stop gluten and soy to combat my reflux esophogitis and was already vegan so am having my own food nightmares.

Donnathomas profile image
Donnathomas in reply to Starry

No it's not but I usually avoid all the advertised gluten free products as they usually full of fat and sugar and all sorts of unpronouncable ingredients 🙈

Helenababs profile image
Helenababs

You may be suffering from a water infection...ive has about 8 since summer 2016...have you thought of that

Donnathomas profile image
Donnathomas in reply to Helenababs

Yes been tested twice this week for them and they were both negative

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Donnathomas

Hi hun.

I'm sorry to hear what your going through. Sounds horrid.

Like starry said push for bsge referral

I like you have a c section and have found taking serrapeptase helps get rid of scar tissue and has eased the pain for me quite a bit. Aswel as taking probiotics. Do look at the serrapeptase though I'm sure it will help you even if it's a bit. While your trying to get sorted. Wish you all the best hun. 💗🤗😘

Helenababs profile image
Helenababs

It's all so varied and wide it's hard to know what is right for individual....ive been told to watch my diet but as a lover of food it's hard to cut virtually everything out....hopefully you get answers you need soon xx

Lulububs profile image
Lulububs

God im so sorry u having to have all this.

C sections can leave u with aloy of scar tissue and nerve damage so it could b this that causing u pain.....the wee bladder thing can b due to the damage pain or mayb pelvic floor dysfunction.... coz of all the trauma of a c section plus endo.

Weight u unfortunately is always gained with pcos as ur body cannot stableise ur sugar or insulin levels and that can b a nightmare.

The ceaoliac thing i get!! I was hospitalised about 6 months ago in awful crippling pain on the left side , they did every test poss mri, ct, xrays, bloods, water! U name it i had it. I basically got told nothing and sent home after 5 days and told id b in for a lap in two weeks as they thought endo... it wasnt that either.. i do have severe clotting i clot quicker then most which can b a blessing if i cut myself but not for periods i now have to take transexamic acid when on period...

So i had a ceoliac test i was borderline they didnt wana say i was but i wasnt so basically i am vert intolerant... and to dairy to GREAT!!

So i had to change my whole diet which i just live on fruit veg and chicken... it my staple diet...

I also take a good probiotic,digestive enzyme, bacteria tablet and peppermint capsules this seems to have eased the digestive pain i get with the gluten and dairy intolerance..

I also go to a womens health physio u may want to try one of these they mayb able to help woth the c section and if u have hip pelvi pain u pelvic floor could b in trauma which means it will either tighten( which mine did) or slack so it worth finding one...

Hope u find some comfort

Starry profile image
Starry

This article maybe be of interest it specifically mentions csection adhesions causing bladder pain

drseckin.com/pelvic-adhesio...

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