I'm at wits end trying to get a diagnosis of endo. Chronic pain for last 20 days, can hardly move. Hospitalised twice in last 3 weeks. Help!

I had very severe period pain so I went on the contraceptive injection for 8 years. This stopped my period but I still suffered moderate cramps. I came off that 2 years ago as I am now married and want a family. I have had terrible crippling periods since, which when I went to the doc a couple of years ago I was told was just part of being a female! I have had cramping and sickness in the past few years which have been getting worse, every other day now. I was told it was IBS. I started getting bad cramps up to 2 weeks before my periods with about 10 days respite in the month. I have now had terrible constant pain for the past 20 days. Dull cramps and sometimes sharp shooting pains in lower right abdomen but I also have sporadic pain all over right side of body, in my chest between my ribs and sternum and sometimes an ache in right shoulder, numbness in right arm. Awful lower back pain. Bottom of spine very painful to even touch and sometimes shoots up into shoulder blades and into right side if my neck. Cramping is now across full abdomen. Stomach very bloated. Feel sick, have constant metalic taste in mouth. Sore heads, emotions on a knife edge, want to cry all the time and I have terrible fatigue. I get so tired I can blank out mid sentence. Periods are not completely regular, can vary between on the date or can go 5 weeks, but last period was 27th April. Still not here. Had lots of pregnancy tests which are negative. Have been trying to fall pregnant for a year but pain can be too sore which ruins the moment so my husband and I struggle to have intercourse often enough. I had some blood clots 2 weeks ago when at the toilet but it was not my period. Through tests it was discovered that I was passing blood in my urine but the hospital didn't think that it was a high enough level to be worried. They could not give me a reason for why it was there.Yesterday they found cysts on my ovaries but they said that they were not large enough, at 2cm, to be causing this pain. I have been to a woman GP who is certain I have endometriosis, she is very empathetic. She has admitted me to hospital twice in past 3 weeks with details of what she thinks I have and a stern letter telling them to not discharge me until they find the root of my problem. The doctors at hospital have now scanned and tested me for everything but endo. I saw a male gynecologist on Friday who gave me an examination, where I nearly hit the roof when he touched my cervix but somehow didn't think I had a gyno problem. The hospital have now discharged me for the second time and told me to just manage my pain. I have pushed and pushed to get a Laparoscopy. They have now said they will send me an appointment to get a vaginal scope but this may take a few weeks. I can't take the pain. When I was in hospital I was on morphine tablets which helped take the edge off, but now all I have is paracetamol, Ibuprofene, codine and heat pads. Docs worry if I take stronger painkillers I will become constipated and make symptoms worse. GP and myself are at wits end with the so called specialists. I am in process of trying to see my GP again but I have to wait till 13 June for my appointment. If I go to my clinic for an emergency appointment, I will get a different GP and I will have to start all over again. I want to get back to work and on with my life but I feel totally debilitated. Any advice or information from anyone who has had a similar experience would be appreciated.

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  • Hi it is awful that you are having to go through this. You need to go to the gyne at hospital and say you need to have a laparoscopy so that they can take biopsies and determine if it endo. I am afraid you will really need to push them, when I went for mine, he was a male and asked if I was sure it wasnt me not being able to cope with period pain, I could have screamed as it felt like no one of listening. Just explain that the pain is ten out of ten and that you cant go on like this. They will have to do something, a lap is the only way that they can say for sure if it is endo. You have to be really persistant with them, do not leave till you get the answer that you want.

    Good luck with it, no one should have to suffer like this to get the correct tests, doctors really need to get better at it.

    Hope this helps

    x

  • Thank you for taking the time to read my massive question and replying. I will need to step it up a gear and push even harder. I just feel so isolated and I am sick of moaning to my family, who are very supportive but don't fully appreciate how bad it can get. x

  • Hi Nicky,

    This is awful, but sadly that is the NHS for you.... I was referred to the urologists first and spent every day for a month ringing and ringing to get them to do a cystoscopy. They decided it wasn't urgent despite me pleading and going to A&E countless times. EVENTUALLY they did it and it showed nothing so I was back to square one with the gyno's. I was told I would have to wait 6 weeks to see someone and then even longer for the op, despite being in the same amount of pain as you. And as you, having no suitable pain relief. In the end a friend's father lent me the money to go private. But with the nhs you have to be persistent - and I know it's tough but he who shouts loudest as it were! I didn't have the strength to continue so my mum took over - sometimes it's easier to have someone else do it as you are probably tired and stressed. The positive thing to hear is that you have a good GP - I didn't and was actually made to feel worse by them. So cling to the good GP and maybe consider finding someone who is strong willed and doesn't mind making a fuss.

    It's crazy how so many people on here have the same experience. I only joined yesterday and only had my laparoscopy 2 weeks ago. But I spent the whole of the year so far in pain and fighting to find someone to help. Don't give up! And as for feeling isolated and worrying of moaning - I couldn't relate anymore if I tried. I have felt exactly the same.

    xx

  • Next time you go to AnE or your docs or gyne, take a few people with you.

    One to make a bit of a fuss, you may not feel up to talking sternly with the doctor.

    Two, they can also tell them what you are like when in the pain and how you can do nothing. If the doctor hears it from a few people, they are more likely to take you more seriously!

    I do also agree tho, that if your GP is great, stick by her, you need as many people possible to push for answers. The sooner you get that, hopefully the sooner you will be able to get better pain relief!

    I wish you the best of luck, but if you really cannot deal with the pain any longer, going private may be the only option :/ I know it can be expensive, but when you eventually find out if its endo or something else, and you are on the right treatment/ pain relief it will feel like a god send compared to how you feel now!

    xx

  • Thanks guys, I am going back to my doctors surgery tomorrow to the open clinic and try to get the GP that is dealing with me. If I get any answers, I'll let you know. Thank you for taking the time to respond. All great advice. xx

  • i agree with confused a bit too i complained at doctors A n E and Emergency doctors continuously for a year and it wasn't until my partner explained how bad it was from his view i had a referral and then a laparoscopy i was lucky to have mine 3 weeks ago but prior i had female doctors tell me it was hard sex and kidney stones and directly before mylapar oscopy they told me my scans had shown no reason for my pain however they found my bowel stuck to both abdomen and my back its so frustrating and it seems to take all the life out of you but if u don't stick up for yourself no one will sounds like your doctors already sympathetic perhaps she could refer u elsewhere treatment can vary alot between hospitals and if u feel this one is refusing to listen you then you are entitled to another opinion remember they are working for you nhs or private as medical professionals they are supposed to care for your medical needs and you should feel that way stay strong you will get there xxx

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