Endometriosis & pain

[Truffle25]

From my early teens I suffered from the most horrendous ovulation pain. Every month I’d have a night where I’d be curled up in bed feeling like my right side was being torn in two. If I tried to stand I’d be doubled up in pain. The first time it happened I saw my GP who told me it was normal and just something that happened to women so I just got on with it and endured it once a month for 20 years.

Once I hit 30 things worsened. The pain would reach unbearable levels and leave me screaming. Not only that but it was no longer just during ovulation and the pain would reach a peak gradually over a month or so then it would hit its peak and lessen until it would gradually build up again.

After one particularly bad attack a few years ago which saw me crawling on my hands and knees up to bed and then sitting screaming out in pain at work I was persuaded to see a GP who told me it wasn’t normal and could be endometriosis.

I was sent for an internal ultrasound scan which traumatised me, the woman doing the scan was rough and rude as I found it hard to tolerate the internal scan and left me in tears and in pain. After months I finally saw a junior member of the gynae team who started me on the pill which then lead to a horrendous side effect that left me in hospital and did nothing to help with the pain.

During this time I was having flare ups of pain that were so awful it feel panicked just thinking about them. I’d go to the GP and see a different one each time who’d dismiss me and tell me to wait for my hospital appointment.

After a few more months I refused to go back on the pill and another junior member of the team grudgingly agreed that I could be put on the list for a diagnostic laparoscopy although it was ‘unlikely’ they’d find anything.

Two years ago I had the laparoscopy. Turned out I not only had endometriosis but it was severe rectovaginal endometriosis and it was everywhere. Luckily, (or not so luckily as it turned out) I was operated on by the departments specialist in endometriosis so was informed he’d removed it all (again, by a junior member of the team). After surgery i had an awful experience of being ignored by the nurse on the ward and left in urinary retention for 20 hours then contracted urosepsis post discharge probably due to this and her poor hand hygiene when finally agreeing to catheterise me.

In the months that followed the surgery I got absolutely no relief from the symptoms. I was in worse pain than before and my life was so miserable I nearly gave up. The care I received from my hospital which was meant to be a specialist endometriosis centre was appalling, failing to arrange MRI scans, dismissing my ongoing pain, leaving me waiting 5 hours past the time of my appointment then getting dismissed for not wanting to go back on the pill as I react so badly to it.

At my final appointment 10 months post surgery I was so low I didn’t care anymore. I finally saw my ‘specialist’ who told me that there was no way there was still endometriosis as he’d got it all and that some women just get pain and have to live with it. He discharged me and prescribed a really high risk version of the pill which I took for a week.

By the end of that week I was on my hands and knees in pain like I’d never experienced before. I went to A&E in desperation who, at the mention of endometriosis, sent me to the urgent GP centre across the road where I lay sobbing on the floor for 3 hours waiting to be seen. Luckily I saw a wonderful female GP who was so horrified that she had me admitted straight away to the gynae Ward. Once I got up there though I was left in an examination room and not given any pain relief for 5 hours. The next day I’d been dosed up on morphine and the pain had eased so he surgeon I saw discharged me but was very frank at how concerned he was that is been discharged from the specialist without any attempts at treating the pain.

The pain continued to be up and down for the next couple of months and then... nothing. For nearly a whole year I was totally pain free. Not a niggle until last November when I had a mild flare up but I could manage it. I began to think I’d gone into early perimenopause as I started to have hot flushes at night, awful hormonal migraines and my periods were barely lasting a day.

Since the new year however I’ve been ignoring the gradual symptoms that have been building up - the pressure and discomfort when I lie on my right side or if my bladder is full and the odd twinge that stops me in my tracks. That was until last weekend when I had a horrendous flare up that is still going on now. I’ve been taking codeine like sweets and praying it doesn’t reach the worst I’ve experienced previously. On Monday I could barely walk as it felt like it was pressing on my sciatic nerve and an hour ago I had been sat on the side of my bed waiting for codeine to kick in so I could lift my legs to get into bed without screaming. I can feel that the pain is gradually worsening each day and am utterly terrified that it will become unbearable.

I’m going to ring my new GP tomorrow to see if I can be seen but I don’t know if there’s anything they can do. I can’t bear the though that either it’s grown back or never really went away and the reprieve I had was a cruel trick. It’s ruined my life over the past few years and I really don’t think I can go through it all again.

Sorry this is so long but I live on my own (which makes it even worse when I’m in pain) and the only support I have is my mum who I really don’t like to worry.

AIBU to be feeing devastated and sorry for myself?

[chronicfear]

I'm so sorry. Funnily enough I also have endo and a lot of pain and trauma plus other health issues, and I had a useless gyno appointment today where the guy was very dismissive of my ongoing problems and basically told me to have a baby now and to go back if I have fertility issues. The reason I want more surgery or other solutions now is because I want to be as healthy as possible to have a child. The care available is just atrocious. Just know you're not alone.

[Truffle25]

Thank you. Sorry to hear you had a rubbish appointment, it’s so unfair how poorly understood a disease it is by some of the professionals who are meant to be the experts. I can’t even say that in my experience female doctors were better than the men.

Hope you get to see someone better who actually cares, I really do think that something as simple as a bit of care and empathy would make everything so much more bearable.

[MummaBear2Be2019]

I too suffer with endo and can completely sympathise with you! The pill did not work for me and no painkillers would touch the pain which often made me pass out, throw up and be crying in pain. I dreaded my period coming. The only thing that actually helped was a magnetic bracelet! I couldn't believe it when after wearing it for 3 weeks my period came around and although heavy and the odd niggling pain I didn't throw up or collapse! I am now currently 20 weeks pregnant and i have to say, not having my period for the last 5 months has been AMAZING but i will be buying a new magnetic bracelet for when my son is born :) I hope you manage to find something that helps you OP.

[Skippii]

I had a similar path until a hysterectomy, and unsurprisingly the endo was all behind my organs and not visible in previous checks.

Surgeon who was positive there was no reason for pain which made me vomit and lose consciousness apologised when she saw the extent of it

[ssunniebear]

I too have endo. Have you thought about seeing if they will admit for pain management? Ask your GP about a pain clinic.

[sashh]

So sorry OP

I had an issue with what eventually turned out to be an ovarian cyst the size of a grapefruit that was developing and then popping.

Due to work and study I had 3 emergency admissions at three different hospitals, The first time I went into A and E I was left in pain for most of the night, other patients were complaining that I had not been seen (the gas and air in the ambulance had taken the edge off) so when I arrived I wasn't screaming.

The second admission was to the same hospital as the one that ignored me, the Dr took a look at me, asked a nurse if he could give me morphine in 'minors', and then wheeled me round to majors and a morphine drip.

I'm not trying to one up you OP but even in the same hospital you can get different treatment.

In my experience Indian lady doctors over a certain age are the ones who listen most.

You have a right to be pain free if that is medically possible.

Be strong with your GP and I hope you get a better GYNAE.

[ssunniebear]

I have fiound antiinflanitories to be effective.

[Anothertimesoon]

I could of wrote this my self. I also have congestive pelvic syndrome which is varicose veins on the ovaries. Lovely. I don’t have any advice im sorry but would like to know how you get on as I am still to find something to help my pain! X

[TheTurnOfTheScrew]

I have stage 4 endo including bilateral ovarian cysts and endo throughout my bowels
I am lucky enough to be under a good consultant specialist (middle-aged woman if that's of relevance)
I am currently choosing not to have surgery (have been offered both lap removal or a hysterectomy) but have opted for medical management, which currently includes prescription painkillers (pregabalin in my case as I don't get on with opiods.

The above may not be helpful, other than to demonstrate that there are doctors out there who take this condition seriously and offer a variety of treatment options.

[Mia184]

I too have endo and had surgery twice. I can absolutely sympathise with you; there are still too many doctors dismissing the symptoms. When I had the first laparoscopy, my endo had reached the worst stage and the surgery lasted for over two hours.

I am lucky because the gynecologist who correctly identified endo also does ambulant surgery in his practice (he is assisted by aestheticians) since he used to be the head of the gynecology department at a hospital.

I have been painfree now for almost ten years. What helped me, I believe, is getting off the pill because the hormones feed the endo “cysts”.

If the pain is now returning, you should undergo another laparoscopy, preferably at a different place. There are meds that can help you but they make you undergo an artificial menopause (you will still experience your natural menopause at the normal time) and you can only use them for a total of 6 months because of the side-effects.

[ssunniebear]

Sorry phone went crazy antiinflamitories work well for me as a painkiller.

[LaPampa]

I really feel for you. I also have endo and severe pains around ovulation which at best feel like someone is stabbing me up the bum with a hot poker repeatedly and at worst make me vomit and pass out. I’ve found that gradually doctors are taking it more seriously but it took 13 years to get a lap diagnosis.

So Yanbu to feel like you do. Sending good wishes that things ease soon. Is there any chance of seeing someone privately?

[Pursefirst]

You poor dear OP.

There are so many of us with these unbearable conditions and it is shocking how many of us are being treated dismissively. Naproxen worked for me for a while, but I can't take it any more as it kills my stomach. Heat pads, TENS machine, tramadol have helped me in the past; however, I am due to have a hysterectomy and endo excision next week and I cannot bloody wait to never have a period again.

[LifeOfRiley63]

OP, how are you doing now?
I found this thread and felt sick at the treatment you have had.
My endo pain only really started last year with small twinges around my ovaries, or the rare feeling of a hot poker up my backside. I was seen by gynaecology in March this year and had an MRI in July. It took 3.5 months to get the results back over the phone (thanks Covid!) And the lady said I had endo on my bowels and it was twisting one of my fallopian tubes (which might explain why we've not got pregnant after 3 years TTC!).
She has put me on the waiting list for a laparoscopy but the waiting list is huge (thanks again, Covid!). I don't know how to deal with this pain. It gets worse and worse every month. I take ibuprofen and paracetamol and a hot water bottle, but when those waves start I can't even stand up. I feel like I am going to throw up and can only lay there in the fetal position.
I don't want a hysterectomy as I want a baby and the contraceptive pill is obviously a no-no for that reason.
Could anyone advise on what pain medication has worked for them please? Xx