Looking for reassurance!

I'm newly diagnosed, I'm 44. I've had significant pain and discomfort which appeared bladder related for at least 5 years. I had a laparoscopy about 8 yrs ago for fertility investigations which concluded unexplained infertility, then had IVF, luckily conceived first attempt (initially twins but one lost at 11 weeks). I have a beautiful 6 yr old daughter with endless energy. I've spent the last 3 years trying to get insight into/diagnosis of my medical problems which include severe IBS (I now follow a strict and very limited diet and cant eat sugar (except glucose), starch, dairy, gluten, fructose), and the bladder/abdominal pain.

I've been very very tired & trying to maintain my own business, property rentals, a holiday cottage and a family has been a struggle. I've seen bladder specialists & gastroenterologists, dietitians, had bladder investigations, abdominal scans, hydrogen breath tests, blood tests, bile salt tests. They suggested "Pelvic Pain Syndrome". I've had acupuncture at the Pain Relief Clinic (actually enjoyed this it was very helpful at lowering my anxiety due to the pain), done pain relief hypnotherapy.

As my pain was getting worse and very much linked to my monthly cycle - ie ok for a few days after my period but then building to pretty unbearable for at least half my monthly cycle & awful just before my periods, I asked my GP (the women's problems specialist) in February for a gynaecologists referral as a last resort. Not one of any of these medical practitioners EVER mentioned endometriosis as a possible issue. I saw a consultant who booked me for an investigative laparoscopy for suspected endo and I went in for my lap last Friday. Considering everything else hasn't found anything I thought I'd get an all clear & be back at work by Weds! They found and treated endometriosis and adhesions & an ovarian cyst (2x3cms), put in Mirena. I struggled post-op with a nasty reaction to opiate pain-killers and although I was still being sick at 8pm (went in at 9am) I had to come home as no ward beds. Slowly improving, hoping I'm good by the end of the week as its my daughter's 7th birthday party on Saturday!

Whilst I'm relieved to finally have a diagnosis, I'm pretty low to find out I have a long-term chronic condition and a bit worried how this is going to impact on me in the future.

Really pleased to find this support forum as well. Would just love to hear from others in a similar situation and know what I'm going through. Wondering if you get good treatment does the fatigue ease? How effective is the Mirena? What happens at the menopause (as I'm not that far off it I guess). I'm surprised to see the stats about how common it is because I just don't know anyone who has endo as far as I'm aware.

Thanks!

5 Replies

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  • Hi - I am just so sorry that in this day and age you ladies are still being treated like this for years with the obvious diagnosis ignored. There were so many signs. Your fatigue and intolerance of medicine are typical. I can hardly take any without having terrible symptoms. When I had my hysterectomy I threw up after on the meds and retched continuously all night long - it was awful.

    Click on my username and read my posts on endo and it's many symptoms, post-menopause and Pouch of Douglas endo, which is one of the most likely places but is most often overlooked.

    Can you let me know whether the lap was done by an endo specialist and where they found it and what stage - this can be established from the surgeon's report so can you get a copy from your GP. Also can you let me know if the cyst you refer to was a regular cyst or one caused by endo (endometrioma)? Whether the mirena will help really does depend on your endo situation. It can help with period problems but not necessarily with endo as it works locally in your uterus. Can you describe your symptoms before the lap. x

  • Hi Lindle,

    Having an overwhelming morning trying to get a bit up to speed on this condition. Thanks for responding I've read a few of your posts and so reassuring to speak to someone so much more knowledgeable.

    I've always had quite long periods (7 days), not massively heavy, although been getting heavier especially day 1, and acute ovulation pains. Bad cramping day 1. These have always seemed "normal" to me so the question are your periods normal hasnt ever rung any alarm bells. Have had the bladder discomfort probably at least since my pregnancy, not significant before. Has progressed to general abdominal pain getting bad at the end if the month. At the gynae investigation the examined my abdomen - does it hurt here or here? I just said it hurts everywhere at the mo. I've not had very acute pain, but the daily pain gets very draining.

    Before I had my daughter I was very active, liked running, played rugby, tennis, swimming, cycling, yoga (not all at the same time), after quite traumatic birth and weakened pelvic floor and bladder discomfort I havent been able to really walk much without discomfort and often needing to wee alot, I've been playing tennis as I need to exercise to keep my spirits up (susceptible to depression) and you stand around quitalot in doubles!

    The laparoscopy was done by a gynaecologist, the discharge summary states: Endometriosis right uterosacral/POD high up, left ovarian cyst (firm to feel)? 2x3cm endometrioma? Fibroma? Corpus luteal cyst_ovarian cystectomy done & sent for histology.

    Adhesions present in left ovarian fossa, adhesiolysis performed_small endometritic lesions also identified after adhesiolysis in left ovarian fossa.

    Mirena coil inserted as uneventful procedure.

    Haven't had a surgeon's report yet - will ask my gp for a copy. Have a referral to the Cornwall endo centre nurse which is registered on your list. My only concern with them is they are associated with the Cornwall gynae team that did original laparoscopy 8/9 years ago that didnt find anthing, suffice to say I eventually went privately (wasnt eligible for nhs funding) to a clinic in Bristol for my ivf treatment where I had an excellent, efficient & successful service.

    Yet to meet an endo specialist as just received the diagnosis at the laparoscopy on Friday. Dont know what stage I am.

    Thanks

  • Hi - you are stage 4 as POD endo is automatically classed as that. The gynae has actually done a good job in leaving well alone and referring you on. Rest of message sent privately.

  • Big thanks, that's reassuring but I cant see the link for the article?

  • Hi Hun, just read your story....you poor girl! I'm so glad you have your little girl (god that's a tiring age tho!) I used to run my own business too...I used to fall asleep in the floor behind the till when it wasn't busy, I was so tired!!

    The tiredness has always been one of my main issues...and you describe perfectly the monthly cycle of pain ebb and flow.

    Thank god you've been diagnosed - try and get an appt with an endo specialist - my (private) gynae messed about for a year with instillations, Prostap, Mirena, ablation, none of it was effective because he was a generalist and didn't realise stage 4 doesn't respond to the same treatment as, say stage 1 or 2. The Mirena I had years ago and had it removed after about 2 months because it made me depressed, tearful and anxious. At the time, it was new to the market and I was told it was "all in my head " Now, 10 years on, they are aware that the Mirena causes the same mood swings, depression etc as any pill or hormone treatment and freely admitted it when I said I didn't want it.

    Sending lots of love and thanks for your support xxx

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