Worried and need advice and reassurance! :-(

Hi everyone, my name is Claire, I'm 38 and have one daughter who is 15. For as long as I can remember I have suffered from heavy painful periods which gave me passing big blood clots, I have severe pain deep in my pelvis during the time of the month that I ovulate, spotting, lower back pain, shooting pains deep into my pelvis and groin, pain during sex and passing a stool. Blood occasionally when I pass a stool, I've even had a haematoma on my anus.. Not sure if that's linked to all this (sorry to be gross), I always feel bloated and have put weight on to. I was referred to a gynaecologist by my doctor after I had had numerous pelvis scans which revealed nothing, I had another pelvic scan at hospital which showed that my right ovary was higher and larger than my left one?! The difference this time was that I had an internal scan which showed a largish polyp. At the follow up consultant with the gynae he said that he thought I might have endometriosis and also wanted to remove the polyp.. I'm booked in 4 weeks today for a polypectomy and a hysteroscopy to explore my pelvic area closer to see if they can find the cause for all the pain. I guess the reason for this post is that I'm scared, for one reason because I'm scared of what they are going to find, but also scared that they won't find anything because apart from the polyp the scans have shown nothing and I'll still be left with no answers and still all the same problems.. My boyfriend is so patient and understanding but I want to be about to deal with this and hopefully put it behind me.. Has anyone been in the same boat? Any advice would be great.. Thanks. X

5 Replies

  • Hi HeidiBoo, The only way to get diagnosed with Endo is by having a laparoscopy. Scans do not pick up Endo. A high CA125 blood test reading can indicate Endo (inflammation) and might suggest that a laparoscopy is the best course of action. You sound to me as if you have symptoms but I am not a doctor. I didn't have all your symptoms but enough of some of them over time to be referred to the hospital Gynae dept and initially one consultant gave me scans and a hysteroscopy and told me that it was highly unlikely I had Endo. A year later I had a high CA125 reading (over 35) and a dark shadow on my right ovary. They thought it might be ovarian cancer! Following a laparoscopy I was told by another consultant that I had stage 4 Endo not cancer. The shadow turned out to be a endometria (?) or chocolate (blood filled) cyst. Don't know much about polyps but I do gather that they are quite common. A lady in the next bed to me had one removed under local. You will be fine I am sure. Don't be fobbed off like I was; laparoscopy IS the ONLY way to diagnose Endo. XXXX

  • Hi. I have 17 years with same issues as you. Various consultants and diagnosis. None save one of it, pcos, felt right. Had a little miracle in 2006 and my daughter arrived. Tried ever since for another miracle to no avail. Eventually admitted as massive hemoraghic cyst. 8 months later on operating table.....surprise surprise riddled with endo. another further lap 8 months later. Keep going. You know if something is not right with your body. I had a scan 6 weeks before lap which showed a septated cyst, grave concerns.....thankfully all ok on removal. Hope all goes well for you. X

  • Hi, I have nearly the same symptoms. I've had the scans & ca125 blood test which was in normal range. So I have gynae in a few weeks to see consultant. I'm also worried they will either not offer a laporoscopy or do one and find nothing. I'm currently off work and stead going back saying they found nothing asim in so much pain. I have a ovarian cyst which they said to monitor and also an endometrial polyp so maybe they could do a laporoscopy and remove these at the same time. Hope you get some answers soon as I know how the mind works overtime thinking the worst.

  • Thank you for your replies, I know I have to wait for the laparoscopy to get answers and move forward, I just feel very lonely right now with this because I don't really have anyone in the same boat to confide in. The waiting is killing me, I just want answers now but I know I need to be patient. I guess its just the worry that I will have the procedure and they will still say that things are 'normal' :-(

  • I have had bloods done several times with my doctor and at the hospital, I cant remember what the results for the ca125 blood test were? guess I could ring my doctor to ask? The consultant did say though that one result was very high and only seen when the onset of menopause is imminent.. that floored me to be honest because I wasn't expecting that for a while yet! I don't want more children but I guess its just that next milestone in a woman's life isn't it! I mentioned this to my doctor and she looked back at when I had had them previously with her and she said her set of results and been borderline high but hadn't mentioned it at all?! Only talked about it because I pulled her up on it!! She wants to repeat them again in November to see if there is a change or whether they are still borderline?

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