Endo Pain : My pain is horrendous - severe... - Endometriosis UK

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Endo Pain

BNatalie
BNatalie

My pain is horrendous - severe daily pain. I honestly don’t even know how I function

I am awaiting my third laparoscopic excision surgery and the consultant said regular surgery may need to happen. Also being tested for PCOS as a recent ultra sound showed signs of that

I am currently being weaned off the 8 tramadol a day and amitriptyline. My endo consultant said it’s anti inflammatory medication that tackles endo pain (and that some GP’s may not be aware of this fact)

I use a long hot water bottle every night (amazing buy from amazon!) and adhesive heat pads (again, Amazon) for during the day

Flare ups are happening each week and are unbearable with my lower back feeling like it totally ‘goes’. Some nights I get no sleep due to the sheer stabbing pain in my lower back. Ive been having a candle lit bath and been using Epsom salts in the bath (Amazon) and as you guys will be more than familiar with...a day or two laid up in bed with hot drinks, comfort food and Netflix

This condition is awful and I really wish there was more research into it and more treatment the consultants could do. I feel like it’s important to stick together and help each other where possible. I have felt very alone in this & it is not a nice feeling. Being in so much pain makes you feel isolated and I remember going through a stage of being disheartened and frustrated feeling like consultants didn’t believe or understand my pain/condition - don’t let this dishearten you - I understand what it’s like and many other women on here will too! ❤️

Please don’t feel alone in this (I know how that feels.) I am here for anyone who simply needs a chat or to try and help in any way I can 💙

Just wanted to post this as a sort of insight to the condition/tip post and also to get any tips from you guys x 💛

31 Replies
oldestnewest

What an amazing post to read :) mainly because I am feeling all of this daily and it does help knowing others are feeling this too. I am currently awake at 4.30am due to waking up crying in pain about an hour ago. I'm so tired mentally and physically due to this horrid condition. It's lovely to know we can all talk on here :) x

BNatalie
BNatalie
in reply to Cardiff87

It’s so awful, im so sorry you’re going through this. It’s crazy to think we suffer like this this day in age isn’t it! Most definitely, always here! X

BNatalie, I have not had any surgeries for clear confirmation of endometriosis, but other wise I find the same daily pain struggle. I was dismissed from my job as the pain was so bad I just couldn't walk at all some days. The tension from the constant pain causes sciatica down my leg, which makes it even harder to walk. I had the same frustration of feeling like male Gynaecology doctors just didn't get it, and weren't listening.

I was put into hormone medication, (progesterone) , which made me feel worse as it gave me a permanent cramping feeling in my womb, making standing up straight painful. It also made me feel exhausted , depressed , and gave me weird suicidal thoughts, aswell as destroying my libido. Apparently these were side effects I should 'try and put up with as they usually go by 9 months'. I stopped the progesterone after a month as I could not mentally or physically handle the side effects.

My relationship broke down and to be honest it put me off dating at all for a while ! I stopped feeling like a woman and I stopped feeling like I had anything or any energy to give. (Once the progesterone had worn off , I did eventually resume dating).

In regards to painkillers , my warfarin medication that I must take to prevent blood clots, is affected by antinflammatory painkillers, and so they are not available to me. Codeine didn't touch the pain , it just made me feel awful. I resorted to rubbing strong CBD oil on my back, and sometimes Ingesting. I don't have good pain control at all, it has ruined my life ! A year ago I was a healthy individual who cycled, went to the gym , did kick boxing , had a full time job and studying. 6 months ago my symptoms started, and I have had to stop all these activities permanently due to the pain.

It's so upsetting , to see your career , study , fitness , fall away in front of your eyes and be reduced to nothing so quickly. I am currently now getting into debt, trying to stay on my feet, as I also have dependants.

Sometimes I don't sleep at all for nights on end, lying in pain, tossing and turning, other nights I wake after a few hours and I am always wide awake by 4:30 am , when I have to get up because the pain is so bad I can't lie down any more.

I'm trying everything I can to deal with my symptoms, and to keep myself healthy in other respects, but I feel very let down that I have had to wait 5 months between consultant appointments.

I really think it is shocking that this effects so many woman. There must be so many women whose lives are put on hold for years, it's very counterproductive for the whole country. I hope more research is being done because it would make a huge difference to so many people. Ironically, I was working in a research lab before being dismissed for this damn illness!

I hope my post can provide some feeling people are not alone, because it's very hard to get support for such a draining condition. It doesn't have the reputation that other chronic illnesses have, so people who don't have it , don't realise how awfully dibilitating it can be and so you feel you are seen as 'being a wimp' or making a fuss.

We are very much not wimps, and we deserve it to make a fuss because none of us should live like this.

BNatalie
BNatalie
in reply to XenaB

I couldn’t agree more, unless you have it and understand it, it gets totally dismissed and put down as ‘cramp’ - it’s so wrong. It’s heartbreaking to hear how much has happened to you, I really hope you get it under control and try and get some of your life back - it’s horrendous! X

I was exactly the same I got the mirena coil it has changed my life .I wish I got it years ago I don’t have any periods now and no pain before I got one I had one good week out off the month my social / work life everything day life effected by endometriosis but because of the bad reviews I didn’t try the coil give it a go best thing I have done xx

BNatalie
BNatalie
in reply to Green82

I forgot about mentioning that actually, had that much done, i forget! I had the coil fitted last September and unfortunately it has not helped me. I’m so glad it’s worked for you though! I think it’s a case of every persons condition being slightly different so there’s not one specific treatment that helps all isn’t it. So relieved for you though! X

Hi Natalie, I feel your pain literally and your post resonates so much right now - thank you for sharing. I've had another night of zero sleep and excruciating rectal, back and leg pain all from my RV endo. I'm waiting on my 5th Surgery, it feels relentless. I also take Amitryptiline but am sensitive to Tramadol so Oramorph is my go to. I was pretty much drinking it last night! I have the long hot water bottle too and am on ny 6th one of the night - I'd be lost with out it! In terms of advice you're already doing pretty much everything I'd suggest - long hot water bottle, Epsom salts, self care etc. You're right, it can feel extremely lonely especially in the night, but we're all in it together and we are true warriors fighting the endo battle daily! x

BNatalie
BNatalie
in reply to vixstar84

How amazing are the long hot water bottles - I love mine! Most definitely lovely! 💪🏼 X

vixstar84
vixstar84
in reply to BNatalie

Yesssss I love them as can reach front and back at same time and also good for my leg pain. I'm often straddling it to help vaginal and rectal pain too!! 🙈 Xx

Thanks for posting this. I was diagnosed a few years ago but always suffered with pain and horrendous periods since I can remember. I've had 2 laparoscopys to remove endo and was put on the mirena a few years ago as part of my treatment plan. Unfortunately for me I don't think it's worked, I still get really bad pain, I'm always bleeding and my moods are up and down. I have spoken to my consultant about it but was advised to keep going with it.

Due to my constant complaining she recently put me on Zoladex injection on top of mirena. I've had to stop it though as I had the worst migraines I actually needed up going to A&E. I'm still bleeding on and off and wake up most mornings with a headache.

I don't sleep well due to pain and feeling uncomfortable so feel drained most days and have to push myself. Some days I feel so low about it and many people don't understand what it's like.

It's really good to hear other people's stories as it makes you realise that you're not going through this alone x x

Moon_maiden
Moon_maiden
in reply to Emk83

Hi, I used to wake with headaches all the time, until diagnosed with sleep apnoea, with treatment they’ve disappeared. There is possibly a link with this and hormones as well. If you’ve woken up with headaches most of the time it’s possibly worth looking into.

Emk83
Emk83
in reply to Moon_maiden

Thank you, yes I'm going to speak to my consultant about it all next week x

Moon_maiden
Moon_maiden
in reply to Emk83

Good luck, hope it goes well

BNatalie
BNatalie
in reply to Emk83

I’m so sorry it’s not worked for you, I really hope something works out for you. I think the most important thing is trying to take it day by day and thinking a new day is a new day, even though it feels impossible when it’s severe daily pain! Really hope you’re okay! X

Emk83
Emk83
in reply to BNatalie

Thank you, I'm defo trying to but as you prob know it can be hard at times! Hope you're doing ok too!x x

Hi Bnatalie,

Apologies if I'm asking the obvious … but are you in the UK and is your excision team at a BSGE centre / hospital?

In the UK that is the gold standard for the best endo removal. The consultants operating in the BSGE Centres are the best 'Endo' surgeons. They can recognise all the different types and forms of endo - the stuff that general endo surgeons often miss.

They also know how to access all the 'difficult to get at parts' of the abdominal cavity, where endo can be hidden - eg: 'pouch of douglas', plus, they have bowel surgeons on hand, in case there is endo on the outer walls of the bowel.

In my own personal experience, partial excision of endo by more general gynaes, resulted in quick and 'much worse regrowth', because they miss, or do not recognise, some of the endo tissue.

But of course, ignore me if your surgeons is the best … it's just that so many women on here have had partial removals - that then get worse - just because they have not been referred onto the best surgeons in UK BSGE centres, by general endo consultants.

Hope you do find some solutions, soon,

Best, Gritty

I’m in the UK, I’m under endometriosis specialist consultants, yeah I’ve heard that, from one of my previous surgeries I believe mine was in that pouch and was also really close to my bowel so was very complex. I‘ve heard my current consultant is the best by many patients so I’m feeling hopeful, he’s been so lovely and understanding which I find is really rare from my experience X

That sounds really good - especially if the surgeon is lovely … it helps so much to feel they are good people who care and who you can rely on.

Will think of you and hope it all goes wonderfully well!

Gritty x

Thanks for your nice post.

I suffer daily with horrendous pain. It’s starting to have a massive impact on my life. It’s frustrating and it’s stopping me doing things I want to do in life 😪

It’s very difficult isn’t it, it’s quite comforting to know others are going through the same issues as you so you know that you’re not alone though. Always nice to have people who actually understand what you’re going through isn’t it ❤️ X

Yes I would be lost without this place as I often don’t want to speak to family and friends. Although they are supportive, they don’t truly understand what we are going through x

I changed my diet and it has helped massively for me ♥️💫 details are on my page xxx

BNatalie
BNatalie
in reply to Littlepeax

Thank you for your reply, I will have a read through your page. I comfort eat on rubbish when in pain and that’s a daily basis so it’s such a viscous circle 🤦🏼‍♀️ I’m so glad the change in diet has helped you! Xxx

Hidden
Hidden

Hi Natalie my story is same as you. waiting for surgery date for removal of endo as my both ovaries are stuck behind uterus. i am in pain everyday and crushing pain in my back and pelvic pain too. i have 1 year old and 4 year old to look after. just don't know how long i will be able to bear it.

BNatalie
BNatalie
in reply to Hidden

I’m so sorry you’re going through this, it really is horrendous, I can’t even imagine having children to look after when you’re in this amount of pain - I am certain you are doing a tremendous job though! I really hope your surgery works for you. I’m currently on paracetamol, tramadol and they have recently put me on mefenamic acid, worth a look into. I use voltorol gel on my back, I really hope you find something to ease the pain for you. Sending love, keep fighting 💪🏼💓

My daughter is suffering horrendous pain, has had 3 laparoscopic procedures in 3 years. At the age of 21 she was told the Endometriosis was bad. From 14 we have been backwards and forwards to Drs and gynae, only to be told she’d grow out of it by 21, it’s dysmenorrhea or IBS.

It’s ruined her education and work. I too have suffered with this vile disease, and pointed out to the gynaecologist that I believed she was suffering with the same, but told that 14 is too young.

I was very lucky, I had an amazing GP. I was diagnosed with a laparoscopy and prescribed Danazol, which I honestly didn’t find too horrendous, and luckily it never came back and I conceived fairly quickly into my late twenties.

My poor daughter started her periods at the age of ten, and she would bleed for weeks. When she was taken seriously 3 years ago we were shocked to find that she had a unicornuate uterus, with a rudimentary horn that had been bleeding constantly into her abdomen, the surgeon was pretty shocked as were we.

He removed the horn when she was strong enough as the first surgery was pretty extensive. He hoped that this was enough and the bleeding from the horn caused the endometriosis. Unfortunately this wasn’t to be. He then tried Zoladex, the side effects were horrendous, but the pain in her uterus and back subsided.

After a few months he operated again, removed more endometriosis and inserted a slightly smaller coil than the Mirena, a Kyleena as she only has half a uterus. Unfortunately the coil moved, the side effects were awful. It’s caused the most awful acne, I’ve bought all sorts of products to try to help, and her moods were vile. This was removed last October.

Her gynaecologist referred her to a colleague, mainly because she has been begging him for a hysterectomy and with her being 24 it’s pretty young. The other gynaecologist ordered an MRI and Ultrasound to see if anything else was being missed. Everything has come back and nothing is visible, they were looking for adenomyosis, and to check her bowels.

The next course of treatment is vaginal progesterone Utrogestan for 25 days of the month, in the hope of shrinking any remaining endometriosis, and relieving pain. The pain she gets in her Uterus is excruciating, she’s a tough cookie, so if she lets her Mum cuddle her I know it’s bad. She’s just got some oramorph it’s that bad.

He’s actually said that we are running out of options and if she does have a hysterectomy then 2 gynaecologists have to sign it off as well as seeing a psychologist. Also with her having the unicornuate uterus the chances of a full term pregnancy aren’t good. Her body could spontaneously abort up to 6 months gestation. She wouldn’t be able to cope with a child anyway, she struggles with just herself now.

She had to move back home as we can pick up the slack when she’s exhausted. I do her washing and make sure she eats well and has a healthy diet. She’s also been diagnosed with Fibromyalgia in the last year.

It’s funny that we are both on the same progesterone, mine is for the menopause. In fact she’s using mine whilst the letter goes to the GP for a prescription.

It’s been a long, long journey. I’m not religious but when god created women he seriously screwed up on the plumbing. Why do we need a period every month, dogs don’t, once every 6 months, even when they’re spayed they don’t need HRT. WT*** is that all about. Sorry to go on but it makes me so cross watching my daughter suffer so much, and I can’t make it better. That’s a mums job, put a plaster on and kiss it all better.

The hardest part is when the pain is so bad she doesn’t want to be here anymore, she’s had enough. She needs a life and if that means a hysterectomy so be it, I’ll still have my daughter. I have friends asking me if I’m looking forward to being grandmother some day, I could scream at them. They don’t understand, no one does unless they have suffered with this vile disease.

What shocked me is that in the 26 years since I had endometriosis very little has changed. It makes me so cross, my gynaecologist is fuming at the HRT shortage. She said this wouldn’t happen if it was for men. Could you see a burly HGV driver crying at the side of the motorway due to hormonal fluctuations because he couldn’t get his meds, it’s disgraceful.

I could write forever and list how many things have been ruined due to her endo. The worst was checking in at Manchester when she passed out at check in desk due to the period pain (undiagnosed endo). We were taken by Ambulance to Stockport A& E, we then had to get a fit to fly letter, got a taxi back to the airport and the flight had gone. Many a holiday has been spoiled. We actually laugh about the airport incident now. It was like a comedy farce.

Us ladies shouldn’t be suffering like this, why isn’t more being done??

BNatalie
BNatalie
in reply to Clarice123

That sounds horrendous! Far too young to be going through such a gruelling illness! It’s so disheartening for you both to hear they’re running out of options. It’s a condition that definitely needs a lot of research!! I couldn’t agree more, it shouldn’t be an issue this day in age should it. I really hope your daughter gets sorted real soon!

Clarice123
Clarice123
in reply to BNatalie

Thankyou for reading my monologue. It’s been going on for that many years it’s exhausting emotionally. I honestly don’t know how she keeps going.

I do find it strange that Danazol is no longer used, I felt amazing when I was on it. Zoladex was awful for her, but the pain subsided.

Unfortunately she couldn’t tolerate the Utrogestan. I didn’t let on to her gynaecologist that I was struggling with it as well. I kept quiet in the hope that it suited her. It seriously affected my mood and sanity, in fact I felt suicidal, but within 5 days of stopping it I was back to normal, bloody progesterone.

Unfortunately she had the same reaction and we nearly killed each other, I was so evil, completely out of character. I’m off to see a menopause specialist privately. The NHS gynaecologist tells me the only alternative is the Mirena coil, and she knows my feelings about that. She must think I’m dumb, I know there are alternative HRT treatments available and in stock. I do think that some consultants have the God syndrome.

Back to the gynaecologist for my daughter in a few weeks, we’re now at the end of options. He is so reluctant to commit to an oopherectomy, he’s concerned that she may not get on with HRT. I’ve read on professional sites that a therapeutic dose of estrogen gel is enough for the bones, heart etc. But low enough to not trigger off any endometriosis, and an insufficient amount of studies have been done to say otherwise.

All he’s tried is progesterone, she did try Tibilone for a few days whilst on Zoladex, but to be honest the side effects of Zoladex were so bad it’s hard to know if the Tibilone was tolerable or not, and it isn’t the only HRT on the market.

Not looking forward to the next appointment. Why can’t they understand she wants a life. She has never had a pregnancy scare, has been with her partner for 5 years and never used contraception, surely that says something. She’s simply had enough.

Fingers crossed, and many thanks for reading my story, I appreciate it 😁

Hey sorry to hear you’re in a bad place. I’ve just had my third op and I’m feeling the best I’ve felt in a few years! Fingers crossed yours help for you too.

I find an electric blanket handy too so I have that behind me and a water bottle ontop 😂

I’m so glad you’re feeling good! I really hope it’s worked for you! I’ll definitely try the electric blanket hahah the things we have to do ey 😂 take care 💓

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