Being prepared is NOT being a hypochondri... - Endometriosis UK

Endometriosis UK
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Being prepared is NOT being a hypochondriac!!


Hi there, I am currently sat at home recovering from my first ever surgical experience to diagnose whether or not I have endometriosis.

I was actively encouraged by friends and family NOT to google my symptoms, NOT to read into any possible diseases it could relate to and although I knew that the surgery was to determine if I had endometriosis, the moment the lady who I had only had a brief conversation with regarding consent to surgery broke the news to me while I struggled with the side effects of waking up from the general anesthetic I was distraught and completely unprepared!

My diagnostic journey has been from what I can gather typical to what most women encounter, from being told that I was constipated, being treated for Gonorrhea when I was 99% sure there was no possibility of this, endless courses of antibiotics with horrendous side effects for pelvic inflammatory disease to be told by A&E that more of those drugs was the answer to finally moving house and consequently doctors who I told I thought it may be endometriosis and was immediately referred to a gynecology department where I was invited to be part of a study.

Luckily it has only taken me 9 months from the start of chronic pain to diagnosis but now doing research I know that this is extremely lucky.

I wish I had done more research and not believed I was being a drama queen by trying to narrow down the possible causes of my pain.

I am now doing research to find out how to manage my condition to avoid the chronic pain reaching the intensity it did when I was pretending it was nothing. If anyone has any tips on day to day methods of dealing with pain without too many drugs but preferably drug free that would be great!

12 Replies

If it helps at all , the Drs weren't too helpful with me only clinically diagnosing me and giving my body weight in hormones to stop the bleeding, which have also helped reduce the pain slightly ( and same with friends / family not to google - yet all suggested it could be endometriosis ) I think we all know our body and know when something isn't right. Your not being a drama queen at all - my drs were the same one suggestedly saying 'maybe your boyfriend has cheated on you since you've been together' reinforcing it was an STI and that the pain was because i needed to empty my bowels ( jokes on her because the sti tests all came back clear)

As for pain, I am literally living in the bath the heat helps me. Exercise apparently helps ( yet I have no energy to do any) But hope to get into running. Also healthy diet etc all the normal things we get told to do all the time and usually don't. That is what i have gathered from what I have read.

Lena Dunn ( I think her name is) does post on her instagram books etc. and her experience (she's a celebrity incase u don't know who she is) with endo.

Sorry I'm probably as clueless as you are but do hope your feeling ok xx

millipede-24 in reply to MS95

Sorry to hear that you had a similar experience! Not sure who she is but will definitely google her now :)

I don't really know how I am feeling to be honest! I am not at all myself but can't seem to snap out of it!

MS95 in reply to millipede-24

I know how it feels so I can relate. I knew instantly something wasn't right and well clearly I know my body well ! I hope things get better for you :)

It is ridiculous how it's frowned on googling symptoms, of course you have to filter out stuff like if your looking on trip advisor. no GP knows everything and other peoples expiriences are so helpful . The hints and tips on managing pain giving us hope and info about pain so we can understand what's going on. It beyond annoys me when people treat you like you're a hypercondrIac for looking up what's wrong with you I just don't listen to them just look at info I find with an open mind and make my own judgement . PAin levels are such a personal thing and endo pains have the extra annoying level that there's most of the time nothing visible to show , so when I say "look my stomach really hurts " and it just looks normal it difficult.

I am really careful with diet which helps a little and hot water bottle s, magnesium , good multi vit, lots of ginger , turmeric , cinnamon , and black pepper

Exactly, even after the op and I told my friends it was diagnosed at endo they were like well don't go on google it won't help! haha

What multi vitamin do you use? I have been looking online and most are either targeted at menopause or just energy/ hair and nails. I do use the others in cooking but have recently made a point in making daily smoothies and putting everything in that.

I just taking solgar ones presently but think when I've finished them will try some wild nutrition ones as they look really good 💗 Although because I'm 41 not sure which ones to buy as some are fr over 45 and some for under I'm awaiting a hysterectomy fr adenomyosis so think my body a bit more aged if you know what mean 😂😂 . Nah googling does help and saves the dr time I had no idea what endo ar adenomyosis was and if I hadn't googled it the dr should have had to spend ages explaining it to me with diagrams , sympathy and a you tube video 😂😂😂😂 and you know you wouldn't get that on the NHS in the UK 😂 💗💗💗💗 hope you feeling ok .

You've been treated really rubbish with being given load of abx too I see from your post maybe really up good gut stuff too, like sauerkraut and other fermented food lots of stuff on the net about pre biotic too to soothe your gut . I also take milk thistle and slippery elm powder is brilliant for digestion very soothing and aloe Vera juice . 💗 Hope you've had a pain free weekend anyway .

I have been doing a bit of research and there is a lot of sites that state that copper isn't helpful for endometriosis and all multi vitamins I have come across contain it so I have opted for a B complex and evening primrose oil capsules.

There is quite a lot of research about hysterectomies have you had a look?

Ah that's what the milk thistle was for, I got to the health food shop and was so overwhelmed I didn't remember everything.

Hope you are good, thank you for responding to my posts :)

Hah, always Google! A good doctor wont mind you researching as long as you don't take everything you read as gospel truth, and research can help you filter out good doctors from bad.

My body hates synthetic hormones, I've tried but it never works and gives me awful side effects - like raising my low-end blood pressure to prehypertension levels at the age of 20! This pretty much leaves me painkillers - I find codeine the best, lifestyle - cutting out gluten and cutting back on dairy really helped my symptoms (can't quite manage the full endo diet though) and coping mechanisms - heat from my hot water bottle is the best, TENS machine for travelling, and a darker than average sense of humour helps me through.

Ahhh that's interesting I will look at the copper thing my main problem is the the adenomyosis I think so my womb is swollen and sore and the biopsies done during my lap came back to confirm this and my womb is squashing my bladder and bowel causing pain and issues.

I get these all month and now get horrendous periods but only the last 4 months this has started. I've always had heavy ones but manageable but now they are ridiculous . I don't really want to take any hormone therapy as from what I can understand hormone therapy with adenomyosis will only halt it not reverse it. I also have endo that was found in lap which was removed from rectum uterosacral ligament and ovary all on the left. Pain is so bad now nothing seems to help , have run out of coping strategies yoga used to help but it too painful now , still walking and stretching and allotment digging but mostly just sat on the floor doing tiny bits at allotment and small amount of excercise. It so annoying..... hysterectomy seems the only option ..... Well it is the only option I've been given at the moment

got urologist next week in case they have any clues but also have pre op for hysterectomy next week. No date yet for hysterectomy as need it done laparoscopic ally so endo can be removed at same time , they leaving ovaries.

Having CBT also at moment to help deal with pain and it all mentally ....its grinding me down , I'm self employed so no sick pay so it's very hard I really don't want op but think it's the only way forward everything else is just a sticking plaster I think.,....... Anyway sorry long rant. Hope you feeling ok and thanks for the copper info 😀😀😀💗

You can gain research on so many good sites .

Print it out

Take to dr

Seriously gonorrhea ????

That can be checked with a blood test .

Amazing !

Some of these people or docs seem to go so far out in left field rather than say he obvious

Maybe not to much money for them in endo !!!!

I , for the life of me can not understand why they are so afraid to find the truth

I know, I think it is mostly laziness. The worst was when I got told by TWO different doctors that it must be constipation. They were both happy to just let me go with that diagnosis, with no other information other than basically you are a hypochondriac.

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