24 yrs and still struggling! : I've had... - Endometriosis UK

Endometriosis UK

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24 yrs and still struggling!

dodgeviperdiva profile image

I've had problems with my periods since I was 13 and have been wrongfully diagnosed twice, first as IBS then PID I've had so many operations u can play dot to dot on my scars 😂.

In 2005 I was diagnosed with endometriosis, I have been passed from piller to post & had every combination of pain relief you can imagine that I'm running out of options!i

I've been suffering now 24yrs it's depressing, my symptoms consist of

*Constant severe/disabling abdominal pain. (worse when ovulating or on)

*Nausea /vomiting. (causing dental issues)

*constipation /diarrhoea *ovarian cysts.

*low immune system. *struggle to concentrate.

*Constantly getting infections. * Body aches.

*Persistent tiredness .* Lack of appetite .

*Insomnia. * Headaches.* Memory loss .

*Mood swings. * Low moods & Depression.

*Anxiety & panic attacks. * Itchy all over .

*Constant thirst /Dry mouth. *low sex drive.

*excessive sweating? (does anyone else have this problem?)

*extreme weight loss! Just to name a few.

I caught sepsis & encephalitis because my immune system is weak, I've gone from a dress size 10/12 to a 4/6 in under 6mths and I weigh 42.5kg! (I've been attempting to gain weight for 3 years now 😂)

I'm currently under the pain clinic who have put me on 30mg/ph butrans patches, 600mg of pregabalin, dyhdrocodine & anti-sickness tablet's, all have their own set of horrible side effects!

I smoke cannabis for pain as the pain clinic refuse to give me cbd oil on prescription?

It's the best pain relief I've found so far & thier are loads of studies on cannabis for pain relief.

I am on pip as I am unable to work, when I'm on I can't leave the house as I bleed through my clothes.

My daily life is being seriously effected, its put strain on my marriage and my Family, I'm 37 have 3 beautiful children and had my tubes tied, I asked for a hysterectomy and was refused? 😂 I'm now hunting for other ways to get the help I need as I'm out of idea's?!

Please help anyone 😊

31 Replies

Hi, I was just reading your post then and I have all those symptoms, I'm only 22 and my whole life has stopped. No one seems to be helping me I keep going to different doctors and they just put my on the pill and give me pain relief but neither are helping. They think I might have endometriosis but won't do a laparoscopy until I've been on the pill 6 months but it's horrible living in so much pain it's already been over a year since it started. Have you been diagnosed with Endometriosis?

Is your gyne a registered BSGE endometriosis specialist? Finding a doc who listens can really depend on their knowledge of endo, if they don't know enough they tend to fob you off xxx

No I don't think they are, how would I know who is? Can you request one?x

There's a website you can check, Google "BSGE registered endometriosis" and you'll find a website where you can put your postcode in :) then just jot down the names of the nearest hospitals and the consultant names. I did some research on mine and actually went with one who is further away because he was more qualified and had a really good reputation. You can also then search and find if they have an NHS practice, then just take that info to your GP and request a referral to them. That's what I did after my local hospital messed me around, it's in the NICE guidelines that we have the right to request a second opinion at our hospital of choice, as long as its in England. So stick to your guns babe you're perfectly entitled to it :) xxx

CryBaby91 profile image
CryBaby91 in reply to CryBaby91

I did pay to have an initial private appointment with the gynecologist, so I could make sure I would be happy with him. He agreed to put me on his NHS list and wrote to my GP to request it, so if you're in a position to do that it can speed things up xxx

thank you I will look into that today xxxx

Right okay I will do that thank you xx

I'm sorry that ur suffering hun, unfortunately it took over 10 yrs but I was diagnosed in 2005, I found hormonal treatments to be useless, if anything I believe it sped up the process? the best pain relief by far is cannabis the other options the hospital give you are so bad for ur liver and kidneys, if I'm honest my body became addicted to the opiates & other meds they had me on, because I build up a tolerance to them I have to detox from them once a month & withdrawal on top of pain is horrific! I really hope that you get the help u need keep pushing for it, no one should live like this xxx ps if you want to chat with someone who understands let me know xx

Yeah it's horrible, I'm in so much pain 24/7 haven't been out of pain once in nearly a year. I'm on Zapain and Naproxen but I know you shouldn't be on them long term but that's all I'm being offered been on them 7 months now. I've been put on the Pill and told to see how I go for 6 months but I can't handle it it's to horrific x

wow they don't get how it can completely fcuk your day to day life not to mention ur relationships. have they put you on stomach protectors? eg omeprazol? they had me on naproxen and diclofenic for 5yrs and no stomach protectors so I ended up with 3 gastric ulcers all fun xx

No I'm not on any stomach protectors should I ask my doctor to put me on them?xx

yes hun ask, stomach ulcers are horrible it felt like a heart attack! omeprazol stops the Ibuprofen eating at your stomach lining, xxx

Okay I will do, that sounds awful, don't want that on top of everything else xx

Hey sweetie, gosh we sound so alike! I have every one of those symptoms and a few others. The consultant you are seeing, are they BSGE registered endometriosis specialists? Or basic gynecologist? Your case sounds like it needs a proper specialist, and by the sound of it you've not seen one! I saw one a few weeks ago after a decade of being messed around and misdiagnosed (lupus was the worst!), he was super understanding and completely wanted to help. I had to pay but he's now put me on his NHS list, so it's a good option if you're unsatisfied with your current team. Xxx

CryBaby91 profile image
CryBaby91 in reply to CryBaby91

I also use cannabis :) best relief out of everything I take! Xxx

I'm not sure? I've had so many gynecologists at the hospital I've lost track but I'll look into that & see if we have any this way? thank you for that 😊 the best part about the cannabis is relief in minutes and no side effects xx

I did a comment a bit further up explaining how to find out your nearest BSGE centre, I hope it helps love! I've been fobbed off so much that I just paid in the end, finally getting taken seriously now.

Completely agree there! It drives me nuts that it's illegal 🙄 better than every painkiller I get from the docs! Xxx

😂 I know but it will be legal soon we usually follow America in that respect lol🤣🤣

I'm so sorry to read your post, I really feel for you. I feel that you need a hysterectomy. I asked when I was your age and was refused by my consultant at the time even though I had stage 3 endo and was pushing 40 anyway. I paid to see another consultant privately then he switched me over to the NHS. He did another lap a few months later, removed 100% of my endo and I was still in pain. He gave me a hysterectomy a few months later and I have no more pain. I know it's exhausting but you need to be really firm with your consultant and be adamant about what you want or find one that listens to you. Wishing you the best x

hi hun hope you are well? I can't understand the NHS reluctance to give a hysterectomy, Ive had my tubes tied and they still won't? I was told that it could cause further complications and there is a chance the pain will increase still be there? so I need to get another opinion 😂 Glad to hear that you are doing well xxxx

Thanks x I hope you get sorted. I think it's a default reaction to save money but it's not right that so many women have their lives ruined because of these awful issues xx

couldn't agree more, I feel completely let down by the NHS and I'm look to sue. I wish It didn't need to come to that but the saying "first do no harm" doesn't apply here. 😔

Hallo! Not to muddy the waters, but some of those symptoms sound like thyroid issues and/or diabetes (both of which I have, on top of endo). Have you had any blood tests to rule these out?

hi hun how's u, I reg have blood tests but other than I'm seriously anemic they tell me my results are normal 😂 I've come close to needing a blood transfusion a couple of time's, I am currently in the process of getting another opinion so fingers crossed 🤞 xxx

Haha, my bloods are “normal” despite a small goitre and other symptoms. I still wouldn’t rule out thyroid issues as both hypo and hyperthyroid are linked with anaemia (see also pernicious anaemia). Best of luck, I hope you find answers. Xx

thank you, I will make sure on my nxt blood's that they check my thyroid xxx😊

Hello I just wanted to send support your way. I don’t have advice as I’m in the same boat almost exactly except I gained weight. (I sweat too.feminine powder is my friend, it’s basically corn starch)In addition to stage 4 endo I was just diagnosed with Sjögren’s syndrome which effects my joints and adds more fatigue and brain fog. I have one beautiful child via adoption as I couldn’t conceive due to endo. Terrible pain since age 14. 42 now. I want to try marijuana but due to my job I can’t use it even with a medical note I’m very curious though. Can you describe how it helps you specifically? Does it eliminate pain? Anxiety?it sounds like youve been suffering so long and I’m glad you have at least one thing to help. It does drag you down when it feels never ending. I have ibuprofen for pain and citalopram for anxiety and depression. I also have hot water bottles and heating pads. And a tens unit. But none of it helps when it feels like my uterus is being gutted with a machete. No one understands. I did have robotic surgical removal of the endo adhesions with a top specialist 7 years ago. But unfortunately it didn’t help. Surgery is supposed to be the gold standard treatment too. I never took birth control or hormones for endo treatment as I was told it can make endo worse and endo feeds off estrogen. .all those pills just cover up the problem.and add more problems. We need more research and real medical answers. In the interim I Just want to send positive vibes your way. And I hope something works for you soon. I am fortunate I can still work but I struggle terribly and have nothing to give outside of work. I have to take days off just to clean my house as I can’t do work and basic house upkeep.

Hey, on the cannabis question :) I also use it and it's been the best relief out of everything. It doesn't completely remove it, but I find I can relax and it takes the edge off it. Sadly you won't get the THC form on prescription unless you pay for a private one and then you need to have one of a select few conditions (endo isn't one sadly), plus it costs A LOT. So sadly I get mine illegally, but hoping for a change in the law in the future. Like you said nothing can stop the pain when it's raging and gutting you from the inside out, but anything is better than nothing xxx

Thank you kindly for your response. It’s legal for recreational where I live (New York state)but since I work for A federal government agency I’m not allowed or risk being terminated from employ. I wish I could evade if I got tested. But I won’t risk it. I believe my whole country will go towards complete legalization but it’s hard to wait.

hi hun how's u? I use to take 22 tablets a day a cocktail of painkillers, anti inflammatory's, beta blockers, anti sickness, anti depressants as well as meds for panic attacks, my husband uses cannabis for recreational use and suggested that I try it after 6 hrs of vomiting, I couldn't keep water down let alone painkillers! I can safely say that I was desperate 😂 after a few tokes of his joint I felt calm, relaxed and comfortable it, doesn't make the pain go away completely but it makes it so I'm able to cope. 1 joint can last me up to 2 hrs, cannabis also has natural anti sickness properties, is fantastic for depression, panic attacks, anxiety and u can't overdose on it! 😂 I now only take pregabalin 2x daily and a butrans patch 1 a wk, paracetamol when required (although I will be switching out paracetamol for devils claw (a natural anti inflammatory) and I smoke cannabis. My aim is to get off the drug's as I honestly believe that's what caused my immune system to fail and cause me to get sepsis & encephalitis, I'm trying to find more natural way's to get pain relief xxx

Thank you so much. If there was a way I could not have it show up on a urine tox screen I would at least try it but I’m too worried to risk my job. Lol. My local government it’s totally legal even for recreational (New York state). But federal government it’s not. So even though I reside in New York. I work for federal government I can’t use it. It’s such a pain. Pun intended. I believe we are headed to unity on this but it’s so hard to wait.

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