Hi, I am in so much desperation I'm trying these forums to see if you can give me more help than the doctors!
I've had lower abdominal problems from the age of 15 all starting with recurring water infections with a year of being on different anti biotics which my body is now immune too I finally got a diagnosis of painful bladder syndrome (symptons of an infection but no infections) I've had my bladder stretched twice since then and symptoms have calmed down but I believe it is because I know what can cause a flare up and learn to control it. At the same time I suffered with the worst pain I can describe in my right ovary after numerous scans and trips to the hospital I was told I had a burst cyst. I am now 21 and for the past 6 years I have dealt with severe pain in my womb, bladder, lower back and ovaries in day to day life. Sexual intercourse is extremely painful and feels like my womb is being ripped out of me with intense pain in my right ovary. I've been back and fourth to the doctors with numerous scans and they revealed my right ovary is 3 times the size of my left and both are covered in follicles. Last Christmas I finally got to see a specialist after a family friend suggested I could have endometriosis. I had a laproscopy in march to which my surprise the consultant said there was no endometriosis and my womb and ovaries both look healthy. It is now July and I'm lying in bed again off work due to the fact I can't walk from the pain! They are like extreme period pains but I've still not had a period this month. Please tell me I'm not the only one like this? I feel stupid going back to the doctors!! Thank you and sorry for the essay! Xx
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Shoppingaddict
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I got told I had this the same time I got diagnosed with my bladder, but after my laproscopy they said there was nothing and I don't have any of the other symptoms for this x
Another one to be checked for when there is no visible signs of endo at a surgery, will be adenomyosis..a very similar condition to endo, but the cells only grow and bleed inside the uterus muscle wall and cannot usually be seen in a lap surgery.
The testing for adeno is usually most effective when done as an MRI scan during or just after a period, when the trapped blood in the muscle gives it a thickened and lumpy appearance.
But as the others have stated above - it does sound more like PCOS from your description.
I would seek a 2nd opinion on the PCOS, a hormone test to start with.
And a lap doesn't rule out endo completely either, it's just that none was found in the most common locations where endo is found. Keep battling to get a diagnosis and find ways to stabilise your day to day life, with period stoppers like mirena coil or bc pills or arm implants and see if by stopping the periods you do get pain relief. That would point towards adeno or endo being the issue. It can take a very long time to get a diagnosis for many ladies and meantime life is pretty darn miserable for them. Never give up trying though.
Thank you for your response! I've never heard of this. I've had hormone tests, every time I go to the doctors they do several blood tests (sigh) the pain is definitely not there when my periods stop as they did when I was on the contraceptive pill cerazette but I came off this for a bit. The first period I had after coming off the pill was the worst ever I was crawling to the bathroom! I have got a doctors appointment later but I just feel stupid as they told me that I was fine after my laproscopy. With regards to PCOS I don't suffer with any weight problems, acne or facial hair etc x
I had PCOS for a short while caused by the hormone treatment I had. I usually get cysts but these were forming and hurting every 3 months whereas usually I can go almost a full year without any bursting. I didn't have any other symptoms apart from excruciating burning pains which I still get occasionally and a pain which I cant even describe but its in the ovary area and it hurts so much I have to go to hospital.
I do have adenomyosis though which was hard to diagnose and was done by internal ultrasound. I have almost all the symptoms and mine is progressively getting worse. I'd definitely get it checked out and check out the website impatient has put a link to as it really is a big help. Although the lady who set it up doesn't run it anymore, it still has all the information on there that you need.
I wish you the best of luck and hope you get a diagnosis.
Hi Shoppingaddict, I don't have weight problems either but the doctors believe I might have PCOS because I have enlarged ovaries which have loads of follicles inside too. I suffer from Endo (which I was diagnosed with in 2010) but my periods have now stopped so they're sending me back to Gynae to see what's going on. I've had a few hormone tests and mine were all normal like yours, until the last ones I had a few weeks ago. I've been reading that some women may not tick all the PCOS boxes but still have the condition. It could also be possible that you have Endo too. Just because they didn't find any doesn't necessarily mean you don't have it, maybe they're not so skilled at looking for it! xx
You've made some great points! Also the blood tests have to be done at the right time of the menstrual cycle to give an accurate result.
My PCOS has always given me acne and extra hair !
Best wishes
Barbara x
I've had PCOS for over 20 years. There are two types. One is polycystic ovaries and this is where your ovaries have multiple 'simple cysts' but you have no other symptoms. The other type is polycystic ovarian syndrome and this has the multiple cysts but also other symptoms including excess hair, acne. Irregular periods & ovulation and difficulty in loosing weight (due to insulin resistance).
If you have either of the above two, these can be detected on specific blood tests (performed on specific days of your cycle) and on an internal ultrasound.
Adenomyosis is more common in ladies who have had children or had surgery on the uterus. It is not impossible to be young and a sufferer of adenomyosis, but it's much more likely in older ladies.
Thank you for all or your replies ladies. I went to the doctors yesterday after another day off work and the doctor basically said that maybe they'll never know why I get the pain but she has prescribed me a form of anti depressants to desensitise my nerves in my pelvis and hopefully calm the pain down i am to take 2 of these each night. I had an internal ultrasound a few years ago when I was in hospital for the burst cyst and this is when I was told my right ovary measures 28 whilst my left is only 7 (my right one being where I still get the pain) I was on cerrazette and my periods stopped I did not suffer with anywhere near like the pain I do now however I'd still get monthly cramps with no period. The worst flare up I've had is my first period I had after a doctor changed me from cerazette to a pill he said was specifically used for PCOS sufferers, the period I got when I was on this pill was unreal when my boyfriend came home and saw the state I was in he wanted to take me to hospital I couldn't even walk to the toilet! Now I'm not on any pill yet I'm still not getting periods just intense pain! I also forgot to mention when I had a camera in my bladder my urologist told me my bladder was covered in what looked like scar tissue which was maybe from old water infections this is what let me to believe it could be endo and my bladder and ovaries are linked and aren't 2 separate problems as they both started at the same time Xx
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