Endo??

Hiya, I'm new here to this .. I just wanted a few peoples opinions as I've been dealing with this for a long time now, since 2012. I have always had heavy periods, painful periods, etc since the age of 9/10 when I first started them. I was put on numerous different forms of contraception to help with the pain and lessen the bleeding. But the pain got worse so I was referred to a gyne who diagnosed pcos via ultrasounds and blood tests to test testosterone etc. But as well as pcos I also experience a number of other problems such as lower abdomen pain particularly in the left side, painful bowel movements and increased bowel movements during my period but also sometimes when I am not. I also urinate more when I'm on my period and when I am not and I need to go much more urgently but I also leak urine. I have abnormal bloating, intermenstrual bleeding, the loss of old blood before my period or sometimes even when I don't a period, nausea, extreme fatigue, bouts of constipation then diarrhea. I also have a retroverted uterus which can sometimes be linked to scar tissue and endo. I had a lap done August 14. The result of that was abnormally large ovaries, some minor adhesions found (but didn't elaborate on that) I also had a hysteroscopy done which came back clear. They also assessed my womb lining (I think) which came back benign. The pain continued after the surgery and I was also experiencing pain during sex and bleeding so I was sent for a colposcopy which came back with cervical ectropion and abnormal cells so they did a smear which showed CIN1 cells, HPV negative but positive for actinomycosis infection due to the coil (which only was in for 5 months) so they removed that but never fitted another in, so I went onto the injection. But the lady from the colposcopy clinic decided that in view of my symptoms I needed to see a consultant who was trained in endo.. I saw him this January who agreed my symptoms were very much pointing to endo and told me that it may have not shown in my last lap as I had a mirena coil in and hormones can hide what's really going on inside but also gave me a weeks course of antibiotics for the actinomycosis infection which was never treated for a long time. So wanted me to be off hormones for 9 months and they will re operate if my symptoms require it. I am due to see him in on October the 2nd which I am very glad about because I have been living on painkillers these nine months.

I was just basically looking for some peoples opinions on their experience and their symptoms and if any of mine are similar to theirs.

I have also have had previous ultrasounds which shows "Retroverted uterus of normal size and appearance with thin regular endometrium. The ovaries are typically polycystic in appearances with a peripheg of immature follicles on each and volumes of >10cc.

Uterus length 53mm x depth 30mm x width 40mm

Endometrial thickness: 3mm

Rt ovary 31x33x22mm 11.7cc Lt ovary 37x41x26mm 20cc" (if this is any of use)

My left side is the side I have the pain that's unbearable as well as in the lower abdomen. I'm sorry if this is long and doesn't quite make sense I'm just trying to work out what the outcome of this lap might be, I just can't stand being told "no accurate diagnosis" again! I'm also not sure as to what the adhesions could've been due to last time because I've never had PID or any other previous surgery.

Thank you for reading!

2 Replies

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  • Hi - your symptoms are typical of rectovaginal endo in a place called the pouch of douglas. Can you click on my name and read my post on it to see what you identify with. This should only be operated on by a highly skilled endo surgeon in an endo centre who has done at least two years specialist excision training. Is the specialist such a surgeon as the NHS guidelines require it? Have a look at my post on how to find a specialist to check they are on the list if you aren't sure. x

  • Thank you for your response. I read your post, I agree .. It sounds very much like what I'm experiencing as well as the 'adhesions' they found last time which they didn't explain to me! I read the link you attached to your post and no, he is not on that list. But when I search his name on the NHS website it says he is trained in endometriosis and names all of the qualifications he has and what he's a member of. I'm not sure on where to go from here now? Do I continue to see him on October the 2nd or something else? Thanks for your response again. 😊 x