Endometriosis UK

Any advice needed

Hi I wondered if anyone could help with advice for me please? Quick history of the last two and a half years for me - gave up my job due to constant pain in my left hip/ lower back couldn't take time off sick due to what was going on at workplace but went to gp and was referred for physiotherapy whilst doing physiotherapy pain/discomfort much worse then got a lump went to gp suspected inguinal hernia, at the same time periods stopped and much more pain and discomfort underneath also, saw hernia specialist who said periods stopping was no link with hernia. External and internal ultrasounds confirming hernia but cysts on both ovaries and not emptying bladder fully which I believed I had??? Back to gp and referred to gynaecologist. Scans with gynaecologist months later still not emptying bladder fully and cysts gone. Gynaecologist said lap and hysteroscopy to be done, which was a few months later - six weeks check up Yes I removed endo from pelvic cavity and discharged. Was still in the same amount of pain as before but was told go back to gp as it wasn't a gynaecology problem! Gp asked for lumbar mri, months later mri diagnosed degnerative disc disease and spondylolethesis and I was referred to physiotherapist! She saw me and was not happy with how I had been treated, saw her for about six weeks, she didn't examine me but she believed I had a pelvic organ prolapse which I had the pain from the same time as when I got the hernia! She said go back to gp and request an abdominal ct scan just to rule out nothing else is going on. Gp wouldn't do it but referred for another ultrasound. Cyst on an ovary and bladder retaining urine this is 18 months after first scan showing this, asked was this a problem person scanning said could be! Went back to gp and he said make an appointment with female gp for examination, she said I have at least a prolapsed bladder and referred me for pelvic floor physiotherapy. A few months down the line pain is continually getting worse, it's now been two and half years, now waiting to see urogynaecologist. Sorry for the long story but has anyone else had any similar symptoms/stories, are there any links with the things I have been diagnosed with? I have very bad pain/discomfort on left hand side hip and groin and down left leg. I started working part time two months after giving up the full time job, I haven't taken one day off sick in all this time but is becoming so difficult and usually I just come home from work after four hours and collapse - I am 43 but feel probably twenty years older - sorry for such a long story!!!

3 Replies

Hey Hun you have been treated very very badly. Might I suggest you go to an endo treatment centre- I am at that stage at the moment. Then all people you need are in one place. I too Suffer similar pain to yourself but could be totally different. I also wasn't emptying bladder properly and get left hip pain that runs down leg and horrendous back pain. I have had bladder surgery- been told i had a stricture which was reason why- not had a problem since. In regards to my back and hip pain- after a long couple of years and surgery found my bowel to be stuck to my stomach. Suffering with it again now so joined a endo specialist centre where all my care will be together and consultants work together. I am hoping this will work. Thinking of you Hun. Chin up and stay strong! Xxx


Hello pink fairy dust 10 thank you for the reply. I hope you get on well at the specialist centre and maybe you are right as I wondered if all these could be linked somehow. I am due to see a urogynaecologist in 12 weeks it's been 6 weeks since referral and I've yet to even get an appointment! I'll see what they say but if I feel it's not the right thing I'll go back to the gp and ask if I can get referred to a specialist centre, is that how you did it? Thank you for you help and support felt so low and down today x I wish you well let us know how it goes x


I was sent home from work earlier in month from great pain. I tried to get a gp appointment but they had no appointments as I needed stronger meds as I didn't want to go to a and e even though I was in agony. I ended up phoning a private go paying 130 pounds to be referred privately and quickly for a referral to endo centre which I had researched and picked. I can go private for one appointment and then go back on nhs it is quicker that way but more expensive. Unfortunately person I want to see is on holiday so I hope to see him in September so it has cost me around 130 to see gp to get referral and it will cost same for one consulatation. It is not the right way to do this but I can't miss anymore work due to illness- am a teacher and it isn't fair on class. Private gp was great- she wanted me to go to a and e but I felt a waste of time. She gave me buscapan and oramorph to tide me over which has worked. I only use oramorph if I have no other choice and it is that or a and e for pain. Buscapan was amazing for my bowel spasms and really helps. That and heat pads. In regards to urogyne go for it you Have nothing to lose and a back up with endo clinic if all fails. Don't give up believe in yourself and make sure you get heard when health professionals don't. You know your body. I learnt the hard way with that and took me a lot of knocks and persistence to get treatment. You are in charge of your body. Look after it when it isn't playing ball and nurture it. That's what I am doing at mo. Am in a lot of pain last couple of days flare up and bowel probs. So resigned myself to sofa, tv, cuddles from my dog, and focusing on myself. Being kind to myself. This isn't my fault or anyone else's. Hand I am dealt but will not let endo win! Heat pad on back and no meds so far. Trying to do this without pain killers but will see how I go. I found with days I had bladder probs less coffee and tea helped and no caffeinated drinks. Didn't drink much after 7pm so I wouldn't be up endless times in the night. Hope this helps. Sending hugs xxx


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