Still Waiting

[WanderingFox]

I’ve been in agony for ages, it all started last April, pain in my lower left side that started as a dull ache but just got progressively worse. It’s around the hip, buttocks, lower left leg and sometimes as high as under the rib cage. After keeping a pain diary I’ve noticed it does flare up around the start of the month. I’d described it as if someone shoved a knife in there and left it. Then there can be burning and sticky, stinging sensations with it.

With it came bowel and bladder issues, extreme bloat and I’ve noticed my allergies have gotten really bad as if I’ve no immune system and I’m getting bad fatigue and headaches too.

It’s been diagnosed as IBS (but they wouldn’t examine my bowels further), then blood was found in my urine and a month later a tiny kidney stone was found and even though I said there was no way that was the cause as I have gallstones and know that kind of pain I was ignored.

I went private to an urologist who saw me for only five minutes, I listed my symptoms and he said it wasn’t kidney related. He brought up my file and said that stone was far too small to cause any issues. Still my GP wouldn’t do anything until I spoke to the NHS urology nurse who said the same thing and referred me to have my bladder looked at urgently due to the blood.

I ended up in A&E with the pain and they advised endo based on my symptoms but then a large amount of blood was found in my urine so they thought maybe the kidney stone had grown and was passing. I got a scan the next day and it was clear, kidney stone gone.

After that I was signed off work for six months but now back and WFH because I can’t afford to go on sick pay.

Been waiting over a year to see a gynaecologist,

During my time off sick I went private to a chiropractor, a gynaecologist, and a physio and got nowhere.

The gynaecologist said because I wasn’t describing my periods as agonising that I couldn’t have it. By this stage I’d been on the pill for about three months and I just said my periods have always been heavy and sore but I presumed that was normal.

I had a MRI and ultrasound and they were both clear so I was told I didn’t have it but I then discovered during an unrelated surgery I had in 2016 endo was found and removed from the same side my pain is (lower left).

I queried this with the gynaecologist and was told that I would need a laparoscopy as a MRI wouldn’t have diagnosed this type 🙄 this from a gynaecologist who said I didn’t have the symptoms of it and couldn’t have it.

I also went back to my GP and asked about it, I was told well sure it was removed so I couldn’t have it and that they knew nothing about endo to advise me further.

I can’t afford a laparoscopy privately so now Ive to try and take my gynaecology appointment forward through Benenden as despite all this I’m only down on the NHS as routine and it’s a 4 year waiting list.

I’m struggling a lot with work I’m in pain and I’m stressed and depressed. As my pain killers aren’t doing much (Naparoxen and Co-codamol) my GP has put me on Tramadol and I’ve had to ask for anti-sickness tablets.

Im just wondering how others feel right now because I just feel like no one believes me, is listening or wants to help me.

[Anne357]

Hi WanderingFox,i am sorry for your struggle relating to pain and lack of help from anybody.U r not alone.I feel the same... doc here hardly believe my symptops,i am not diagnosed yet... but history of painfull periods,ovary cysts etc since i remember i have .Nearly 3 yrs ago i experienced sharp,pulling ,stabbing pain in lower abdominal and private,buttom area every day and back pain. Cant work,cant walk far,cant wear jeans as pain and urge for wee ,pain bigger before using toilet,periods ,i put on weight, my tummy is so big too,constipated etc.Cried so many times...Only God knows that.I asked for help so many times.I was sent for colonoscopy probability of IBS (joke!) but my surgeon never asked me even for diet only said ,,u r drinking too many fizzy drinks" but i answered,, no i do not drink any fizzy drinks only water and green tea" so she answer back ,,so probably too much green tea".

I laugh now thinking of that really😅

.The pain during colonoscopy exam in my lower abdominal was HUGE etc but doc left note in my colonoscopy report ,,left sided abdominal pain but tolerated well"OMG thats absolutely not true! as i was screamin,crying,begging him to stop ,to give me more sedative when he was using camera around my left abdominal!

Now my GP doesnt even want to continoue my sick line for long period of time after reports like that i assume .I also begged my GP to see gyne but will be around 1 year...Calling my health centre its stressfull too -1 time phone operator said back to me- sore abdominal for over 2 yrs its not urgent case ! GP never really asked me about my period pain history etc said only could be endometriosis.Its a long short story really.I am fed up and looks like i will have to go back to work probably soon cant imagine that...People enjoying holidays in hot countrys and i am sitting worrying what to do next about my pain😅😢 Anyway u r not alone💪Be strong pls!!!

[WanderingFox in reply to Anne357]

Oh my gosh that is so awful. Sometimes I think we women don’t show our pain enough but people just think ‘well you look fine, so you’re fine’.I’m still waiting on gynae too but I’ve gone back to work. Have to say I’m quite lucky because so far my work has been very supportive but at the same time I’m stressed because I’m still ill and you’re just thinking is this my life now, will this end and when?

And endo seems the hardest thing to find so you’re worried they won’t find it even when they are looking for it.

It’s crazy what it’s putting us through. Though I was the only one giving up on jeans, I wear bootcuts just or sweatpants, skinny jeans and trousers are gone. I’m bloated all the time.

[Anne357 in reply to WanderingFox]

hi good u have good support in work good 4 u💪 yes goodbye jeans ,hate shopping now as big painfull tummy and like yourself no jeans only loose sweatpants,planning to go private to see gynae abroad where i was born cant imagine to wait that long for nhs gynae here,and am sure that will be just general gynae not endo specialist so have to go abroad i assume.