This is only my second post and I have no formal diagnosis as yet. During my recent appointment with a gynaecologist I was advised that based on my symptoms I likely have endometriosis with adhesions. I could try a progesterone only pill/mirena coil for symptom relief and also consider investigative laparoscopy.
I’ve just had my letter following the appointment and she has highlighted the right sided pelvic pain I suffer with constantly (which she said is likely adhesions).
On the letter it states “reduced uterine mobility in a retroverted position”. This is confusing for me as its always been noted (when pregnant etc) that my uterus is anteverted. Could this be caused by adhesions?
I often get a sharp stabbing pain in this area if I move a certain way, twist my body etc. It’s also painful in this area on ovulation and when I need to open my bowels.
I find in the week before my period it’s at its worst and I get a burning sensation across my pelvic area.
Sex in certain position and at certain times of the month is painful both during and after intercourse. I have a total lack of libido which has had an affect on my marriage.
During my period I suffer from extreme leg pain which I was worried at one point was what it would be like to have a dvt....my gynae has since adviced this is likely due to endo.
I am lucky that I have had 2 children (one c-section, one forceps which led to repeat surgery for episiotomy repairs). I had painful and heavy periods prior to having children and a history of pelvic pains which were put down to IBS since I was 14 years old.
I also suffer from right sided facial pain in the week before a period for which I’ve tried all kinds of medication for with no luck. I’m wondering if this is also linked to my cycle, a neurologist told me it’s “all in my head” and “abnormal pain cycles” .
For the last 2.5 years I’ve been to and from gps and consultants for many ongoing issues (reflux, reoccurring thrush, throat infections, tonsillectomy, nerve pains etc) and I’m wondering whether I’m now finally in the right hands.
Sorry for the lengthy post, I just don’t know what to make of it all at the moment. Any advice or insight from anyone with similar symptoms would be greatly appreciated xxx
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SimplyMF
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I have just had my 3rd lap for endo with diathermy and a mirena fitted - during the surgery my bowel and stomach where attatched to my uterus by extensive adhesions I had endo in my pouch of Douglas, uterosacral ligament, behind ovaries and on pelvic side wall the uterosacral ligament which i have heard can cause the rectal pain and also painful bowel movements, deep pain including during positions...
I get during my period (worse) and sporadically through the month wasn’t always on my period right sided pelvic twinges and sharp pains when I twisted my body, turned quickly and they would shoot downwards (felt like outside inwards up my bum!) when I sat down etc and randomly too. And it was also like a pulling tugging sensation - I also have an anteverted uterus. - I don’t know what can cause this to change?
I also had the painful bowel movements and worse on period this would happen a week or so before my period and whilst on it.
I get pains in my hips, my tailbone and down the inside of my thighs on my period. I also went through a stage of having this electric shock pain in my lower calf. On and off My chiropractor who is fantastic couldn’t even find a reason for it with my back issue. So I put that down to my endo. I too thought at times have I got a dvt my calf only one was so painful. It was on my right side right leg where all my adhesions where found sticking things together I think this could have been connected maybe pushing a nerve which goes into my leg who knows?
Please push and get someone to take you very seriously we know our own bodies better than anyone else
You will get there I took me... age 15-21 to get diagnosed which is not good for us women but ‘how it is’
Thank you so much for your reply, I’m sorry to hear how much you’ve suffered but it’s a relief to know I’m not the only one. I too have worse symptoms in the week before and during period. Stabbing pain up my bottom if I sit in a certain way. Right sided pain if I twist, move a certain way,...this means I also now struggle with exercise.
I’ve suffered with heavy and painful periods since I was 14/15 which often led to me having time off school. My pains during my period are not unlike being in labour. I’ve been told so many times it’s IBS as I bloat to look about 5/6 months pregnant regularly. I’d brushed most of this off until recent years where it’s just getting so much worse...I’m now 31.
I’m cutrently due my period, the fatigue is awful and I’ve had a constant burn deep in my pelvic area for days now, the leg pains are creeping in and I’m just dreading it. I get 1 week of the month where I think I actually feel ok and that’s the week shortly after my period. I’ve got an appointment with my go to discuss the mirena etc so I’m going to ask her to clarify a few things as my uterus has always been anteverted......sooner I get booked in for a lap the better. I have had a previous csection (9 years ago) so i guess it’s not unlikely I could have adhesions which have formed because of that.
Thanks again for replying, I hope your recent surgery offers some relief.
That’s okay... I’m sorry nobody replied to your post... I suppose it depends who comes on and sees it first ect and things Iv had a few missed posts with no replies!
Bless you. I feel for you - I also don’t exercise, over the years Iv had a gym membership gone swimming mainly but then felt exhausted... and the gym a few times but most people go to the gym to feel energised it is the opposite for me with pain after. I use to dance up until I was about 13/14 so I use to do a lot!
I also struggled at school it was embarrassing as when on I’d also have even worse ‘ibs’ symptoms and at school it wasn’t nice running to the toilet all the time and bleeding heavily. I was also from the age 14/15 fobbed off by my GP with IBS and nothing else. I would try all the medication mebevrine, loperamide, things to take 30 minutes before I ate, buscopan, a food dairy nothing helped. And it still doesn’t know! I don’t think I have IBS I think it’s just another side to Endometriosis as it can give similar symptoms to IBS in some. Even the endo belly... BLOATING! looking 5/6 months pregnant by mid afternoon early evening is normal for me... by bedtime I’m like a balloon and it’s not religious to my period it’s all month round on and off (I’m lying it’s most days)!
They would have continued to fob me off probably till this day if I hadn’t of become like steel with them! I went to my final gp visit (twice a week the last 6 months before I was diagnosed) and I said I want to see a Gynae I think I have endometriosis... saw it on google yes had to resort to that! And she said no it’s IBS! And I said fine no problem but I won’t move out your room until I have the referral. There’s nothing to loose I was going private anyway it was no money loss to the nhs if it had turned out not being endometriosis. But it did.
And do you know what... she had a busy list of people to see and she printed the referral off for me and off I went! I had a complication with anaesthetic the first diagnostic lap and it got put back 1 year for allergy testing but I then had my diagnostic lap after all that and was diagnosed.
I’m so sorry your getting your pains from being due on... maybe ask your Gp for some stronger painkillers or naproxen or something for your period specifically for the meanwhile. Iv just brought a brilliant heatpad! I have always just used a standard hot water bottle when I have pains... but saw another endo lady on another forum had it! You plug it in and it’s got 5 settings and it gets so hot! It’s brilliant I’m using mine now as this morning my cramps are hideous wether it’s my mirena or lap cramps I don’t know! Il pm you the name and a photo of it - maybe worth getting yourself one! I had it wrapped round my thigh last night!!
My advice I would deffinately push for your laparoscopy, if you mention mirena to any doctor nurse etc they will say try that first as it’s less invasive than laparoscopic surgery. If you believe you have endo and want a deffinate diagnose go for the laparoscopy.
Tell your Gynae if you wish too that you want booking in, after all it’s the only way to find out. Then you will know for certain.
I really hope they help you. It’s horrible the unknown Iv been there for so long if you ever need to chat to me you always can x x
Thank you so much again. I also use a hot water bottle but it doesn’t help for long. I’ll look into your recommendation of a heat pad, I’ll try anything like that to ease my symptoms.
I’ve been prescribed so many pain meds in the past and find I can’t tolerate most of them. Anti inflammatory meds are a no go due to the reflux issues I’ve had so I get by with salt baths, paracetamol and hot water bottles.
You sound like you really pushed and stuck up for yourself, I go with good intentions of being direct but find I always sit and agree with gps etc when they tell me it’s nothing, it’s ibs, it’s all in my head and one person can not have so many obscure symptoms with good bloods and scans etc. Hopefully I’m finally in the right place now though.
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