New- Undiagnosed

Hi all,

I have been reading many of the posts here and feel comforted I am

not going entirely mad however as I say I have not been officially diagnosed yet and like many others I am worrying that if no endo is found when I have a laporoscopy then what next. Where do I go, am I imaging this?

Over the 4 years since coming off the pill due to my migraines my pain has become progressively worse. My periods last around 10 days which is preceded by some days spotting and often a day of black tar like substance. I have 2 or so days where I cannot get out of bed and I'm using 3 pads at a time and my pain is intense (codeine doesn't help) This week I barely left the house for a week. I sometimes think ovulation is even worse the pain during this period is intense for 5-7 days and twice I have ended up at A&E. In the last 6 months (since I had a miscarriage actually) I pretty much have pelvic and lower back pains constantly and throughout the month my left side feels like a screw driver is being twisted in my side around my left ovary and radiating down into my inner thigh and leg. I often have pain in my bottom like sharp hot poker shooting through it. Finally which I hadn't thought could be related but may well be is the fact I have had cystitis or UTI's for 22 years. I often ignored them and hoped they'd pass but have had antibiotics for them too. They are so bad I often work from the toilet i even watch films on there when sat up all night ( that's how awful they are) I often only find a crouched position on the floor the least uncomfortable position to be in.. Lately tests show no bacteria but I have constant pain/irritating/feeling like just about to finish or stop peeing in my urethra. Finally (sorry for the long list) sex can be painful (not all the time) and Apols for too much info but an orgasm can be terribly painful particularly on my left side for hours afterwards. In the last 24 hours I have had fleeting pain in my right shoulder which kind of crackles up to my neck than stops (it's not lasting 10 seconds at most)

On my last hospital admission they again tried to tell me it was just the copper coil and to remove it I told them I'd had the coil a month and the last one a week (which they removed) so how comes I had all the other problems a long time before. I even had the left stabbing pain in my side throughout my 24 years on the pill and was scanned and told I had pcos (at later scans I was told maybe I don't) finally during this admission I had an ultrasound which showed my left ovary was adhered to my uterus and this has now finally got me a referral to an endo specialist. My referal has been lost twice but I spoke to the lovely secretary on Friday and she had put all my info together for me and will show the consultant on Monday. I had to be discharged to be referred by my GP and the letter she wrote just said left sided pain nothing of my history but the secretary told me to email everything I've been going through and she would attach it.

To me my symptoms fit with endo but I often feel I'm a lunatic who may be putting them together and imagining things. I'm pretty sure I'm not. Could this all just be the cool I've had for 6 weeks causing this. The adhered ovary??

Not sure of it's related but I hadn't used contraception for 4 years and only fell pregnant after 4 years and had the miscarriage so I'm clearly not particularly fertile. Could this be endo too?

Apols for such a long post just confused and in pain and felt good to actually write it all down

Thanks xx

6 Replies

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  • Oh dear you are going through so much and this makes me Sad.My pain isn't half as intense as what you have describe and i feel like ending it all some days.

    You might or not have Endo but there is no harm in checking as some of your symptoms are very consistent with the condition.

    Your GP not summing up your issues appropriately is almost a twat and am glad the secretary is willing to take documents off you.Pain on side makes it sound very basic and a consultant seeing that before you come in can skip many important things.

    Can you confirm if you had a follow up after your miscarriage was evacuated in hospital?.Its really important as the body goes funny...

    Hear me now you are not imagining things.There is clearly something going on.At least you've been referred now so we crossing our fingers for you.

    All my love and prayers.xxx.

  • Hi Atutu

    Many thanks for your kind response. I'm too am sorry to here things are bad for you.

    I had a natural miscarriage at just 5/6 weeks and the follow up I had then was ultrasound to check everything had passed and I was told it had. It was actually 8 months ago now. Gosh where has the time gone! Even with the MC my pain was focused on my left side as it is with ovulation, periods etc

    x

  • Hi, I'm new to this site too but have found people can be very friendly & supportive. I recently found out that I have 2 Endometriomas on my left ovary. Like you I had gone many years with UTI's on & off but didn't make the connection with Endo until recently. Read my post 'CryforHelp' & you will see that I've experienced similar symptoms to you. It's a nasty condition of which I was unaware so many people suffer from. I'm due to have a lap in next few weeks to remove the cysts & I'm terrified as I've never had an op before. It's all very stressful but being in here makes me realise I'm not alone. Hope you get sorted & find some comfort/relief.

  • Hi there

    Thank you for your message. Gosh I'm so sorry to here of your health and anxiety issues. I've had ops before so in terms of having a general aneastetic please do not worry the staff will put you at ease and make you comfortable as possible. I know that won't stop your worry. Are you able to do anything for yourself in the coming weeks to help yourself relax. Yoga, walks or is your pain too much?

    I had a terrible night and only got to sleep around 4.30 until 6ish as the pain in my inner left thigh kept coming in waves. Cocodomal, codeine, paracetamol and ibuprofen did not budge it. That certainly isn't the usual kind of cocktail I like to have on a Saturday evening. Now it's moved just to my left ovary area. That's the problem with this the pain seems to attack different areas so I think friends and family think I'm a hypochondriac.

    Do keep in touch and let me know how you are doing

    xx

  • Thanks for your words of comfort re the op. A friend has recommended a book on positive thinking & a relaxation CD. I just have to retrain my mind from worrying all the time. Sorry to hear of your pain being so bad. It must be awful for you. My pain comes & go's & has only been severe on two occasions but those two occasions have been awful. I do hope that you find relief from the pain in some way & that your life can get back to some form of normal. Good luck with your appointment & let us know how you get on?

  • Hi your post sounds so much like how I have suffered from. I had really heavy bleeding also sometimes I would walk out the bathroom after changing myself and have to walk back in straight away to change again.

    I soaked through beds, car seats and often got caught when I was out where it had soaked through all my clothes and I had to put coats and things around me where I could hide it.

    I got monthly water infections before my period began.

    In December I was put on monthly zoladex injections which stopped my symptoms and now had a total hysterectomy at 37

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