Help with endo diagnosis

[Rachel20]

Have had very painful periods with sciatica pain since my first child 20yrs ago.7 yrs ago it was quite bad, 3yrs ago pain in pelvis and a terrible bearing down making me go to the toilet constantly and getting no sleep.I was given anti biotics for urine infection rang back again and told them it was still happening and not an infection.Was sent for a ultrasound.I was told from that ultraspund that i had pelvic congestion syndrome.Things were getting worse during my.menstral cycle.Dibilitating siatic back pain, severe pain during my periods.Couldnt move and this constant bearing down in my bladder going to the toilet 6 or more times a night.Called doctor told i was being referred to gyne.Was told i would have a long wait for an appointment.Waites a year rang the doctors and found out the doctor forgot to refer me and tbat she would refer me again.Rang 3 weeks after that to find out she did not refer me again.That year of waiting i was in horrrendous pain.The thought that an appointment was coming kept me.going, although i dont now how.During my period i couldnt move with pelvic pain and siatic pain and still constantly going to the toilet.I go and half an hour later have stomach pain as though i have been holding my wee in for hours on end.I found out i had not been referred a second time because a doctor rang and told me and apologised.He said that he had had a meeting with staff and tbey are saying now i have endometreosis.I have not had any tests to prove this.(Has anyone else been diagnose like this.)That i should have the coil ( which did not agree with me years ago, although the pain is unbearable and i may try this because i cant cope with the pain anymore)and that this is the only thing the gyne clinic could only do this for me anyway and i would have to be put back on the waiting list at the back of the cue again with a wait of year and a half.I would appreciate any advice to anything that i have mentioned.I am completely confused.Please help x

[Hidden]

Hi Rachel20, sorry to hear you are in pain. Endo it’s really hard to diagnose. It took me 6 years, many private gyno appointments and scans to finally get diagnosed. Only really experienced gyno can diagnose endo with ultrasound otherwise you need a surgery to be diagnosed. After almost 10 private pelvic scans and no answers I went to see a gyno who is specialised in endo scans and got a proper diagnosis. I am have an appointment in Sept with a constant to decide what to do next.

[Rachel20 in reply to Hidden]

Thank you.for your reply.I think you.are right.I dont understand if there is a test for endo why i am not being offered it.The doctor forgetting to refer me has really been upsetting as the wait times are over a year.I just wondered if you recognise any of my symptoms at all.Although i want to be properly diagnosed by a professional as you say.Thank you so muc again for your reply

[Hidden in reply to Rachel20]

Unfortunately there is no test for endo, surgery is the only way to be 100% sure but some experienced gynos can spot it on ultrasound. Everyone has different symptoms. I have months with barely any pain, but the months with constant 24/7 pelvic stabbing, hip and sciatica pain and bladder weakness. Been told by my GP it’s UTI, IBS, done colonoscopy, abdominal scan, nothing wrong. My body did not agree with coil, gave me bad migraines. Tried POP pill but was bleeding a lot so at the moment just take some herbal supplements and Naproxen for pain. I would suggest you see a private gyno specialised in endo if you can afford it.

[Lindle in reply to Hidden]

Surgery isn't the only way to diagnose and is now considered outdated and is not the gold standard.

[Rachel20 in reply to Lindle]

Hey Lindke.I just wonderd what other tests could confirm endo.I have had 2 ultrasounds the first they said i had pelvic congestion ( not sure if that was still there on my other ultrasound.) The doctor i went to see after my first ultrasound doesnt believe in it.He said it was controversialThe radiologist report said it was.No endo or anything else was found on my ultrasound.Also i have bladder problems frequent urination.Stomach pain when bladder is full.I just wondered if you knew if any tests could show if endo was on my bladder.Thank you.Sorry for asking all those questions but by your reply i thought you may know x

[Rachel20 in reply to Hidden]

Thank you so much for your advice.Its been really helpful.I havent tried naproxen but will do.I have read everyone is different but your right i do need to see a gyne.I have just been told the same that a gp's diagnosis is not enough as they are not specialist in that field.And the back pain is definately attributed to my periods.Thanks again.I was diagnosed with pelvic congestion from.a.scan but this has never been mentioned again.Its very confusing without seeing a specialist.Will have to wait for my referall x

[Lindle]

I'm so sorry you have gone through all of this - your treatment pathway sounds to have been totally inadequate for so many years to now arrive at a potential diagnose to be offered medical treatment when you are in such pain. What side is your sciatica?

[Rachel20]

Thanks Lindle its on both side and definately attributed to my menstral cycle

[Rachel20 in reply to Rachel20]

But actually more directed to the left side

[Lindle in reply to Rachel20]

Left sided sciatica is a typical symptom of deep endo - can you pm me.

[Tttt4444]

I had excruciating back pain for ten years that would come and go lasting weeks at a time it was comparable to when the dentist hits a nerve with the drill, felt like a searing hot knife would wake me out of sleep no pain meds helped I tried Tylenol three and Percocet neither even touched the pain at all but surprisingly the only thing that helped was prescription muscle relaxers. I was diagnosed during hysterectomy a year ago and before the surgery the doctor told me he didn’t think the back pain was related but I haven’t had it at all since the surgery basically all the symptoms that he didn’t think were related went away with surgery, although I still have a lot of symptoms that didn’t. I also had bladder flare ups where for days or weeks at a time I would have bladder pain and would have to run to the bathroom every twenty mins all night long making it impossible to sleep I would also have no warning and have to run and would sometimes pee my pants three times in a night, I did find again the only thing that helped this was the prescription muscle relaxers which my doctor explained that my pelvis was contracting from the inflammation from the endo and the bladder being a muscle was why the muscle relaxers work so well, I highly recommend u try the muscle relaxers for your bladder issues when my bladder would flare up the muscle relaxers would make the symptoms stop and the pain and I could sleep without running to the bathroom. But I think it depends on the cause of your bladder symptoms because I don’t know if the muscle relaxers would work if the endo is on your bladder but they were the only immediate relief for me

[Tttt4444]

Also the back pain was on the same side as the ovary that I ended up having a four by six centimetre endometrioma cyst so I think that might have been the cause ….and the pain was right above my butt on the left side kind of where the hip bone area is

[Rachel20]

Wow...Thank you.Its so strange when you hear other peoples stories that correlate so much with your own.It is so helpful because you feel completely alone.Especially when you are not getting anywhere with doctors.It really is an uphill struggle.its terrible isnt it the back pain and continually going to the bathroom.all night.Im exhausted.The bearing down i feel is terrible.I havent had any test yet. Apart from.an tummy ultrasound and internal ultrasound.Waiting so long.for a.gyne appointment i just want to see if i can sort my bladder problems out in the meantime becuase i cant cope with that anymore.Definately not for a year and.a half.So sorry to hear that you went through all that.I really hope you are.feeling a bit better now.I know the back pain is related.to gyne problems.It.always starts before my.periods.Now it.can come inbetween.Thank.you for help and advice i will really.take it on board x