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I am really suffering at the moment and despite trawling the Internet, I am not sure what is going on. Anyone who could reply to put my mind at rest would really help me. I feel lost and alone right now. Here's my story, but there's so much to say so if you can help me just feel sane, or tell me if any of this is familiar with you I would be ever so grateful:
My periods from a young age
I started when I was 11 and they were always painful, probably more so that other people's - but it's hard to know. With this I would always have diarrhea and a hot water bottle would be my best friend. But I cracked on, as we do, and ignored it by not going out or being sociable at those times. I would go to work and have a hot water bottle on my desk chair. I didn't think anything was 'wrong' I just thought that it was what women had to put up with. My husband mentioned that he had never seen a woman doubled over like I was - but I thought maybe I was being dramatic.
My periods changed over a year ago
Then I noticed I was spotting a lot, but my periods were definitely different. They were erratic and sometimes heavy (bleeding through clothes) but sometimes not heavy at all. I would spot dark blood first, then it changed to pink and then it stopped for a few days before that started again. But then I would have nothing for a few months and so I spent some money convinced I was pregnant (oops). I wasn't pregnant but I was always cramping and aching feeling like I was about to start and then I didn't.
So, I went to see a Gynecologist
Who thought it could be PCOS and gave me a Mirena Coil. No blood tests were done but I had an ultrasound (internal and external) which showed my coil was in the right spot and nothing else. She mentioned my right ovary was close to my uterus, but that was probably fine. No follow up. No more tests, but I could come back if the coil wasn't working out for me.
The Mirena Coil
Gosh, it hurts for a while, right? Constant cramping and a few emotional tears - but you know, it did settle down and it stopped my periods apart from some spotting occasionally. So I was OK for a while - kicking some butt with combat training down the gym and going to work.
So, I though that was that...until
I got on with my life for the next 3 months, I got through most days pain free with some cramping but no bleeding or anything. But then last November I started to have other symptoms. I noticed blood in my urine and over the next few weeks I was having some lower right quadrant pain and back pain in my right side. It didn't feel like a UTI (I had had a fair few before) but I felt off, crampy and I could see that my urine was strange. I was having diarrhea and felt bloated all of the time. So, I saw a GP who gave my antibiotics and sent me on my way.
The drugs don't work (tune!)
I had 7 lots of antibiotics which didn't work - they thought UTI, perhaps PID but cervical smear and urine tests showed nothing. My urine was culture free but consistenly had blood and protein in it but the pain - oh it was bad. I stopped going to the gym, put on weight and my mood was just low, low, low. I didn't know what to do with myself. I took time off work for a few days and then signed a flexible working agreement to allow me to work from home (this has been the case since early Jan)
So, I headed to A&E
I had a slightly raised temperature, my bloods showed minor inflammation and I stayed overnight. They diagnosed me with kidney stones which they said had probably passed in the night. They sent me home, still in pain and with no answers. I am sure I did not have kidney stones. I was basically just dismissed.
I went back to my GP several times - Appendicitis??
Actually, several different GPs who I am sure thought I was crazy. But one GP said she thought I had appendicitis. Off I went to be admitted to Surgical Assessment Unit. I was very dehydrated, in agony and was tachycardic. But they didn't think it was my appendix. In fact they didn't have a clue what was wrong (still thinking I am crazy I am sure) and sent me home with a referral to urology. This just didn't seem right to me. I mean, my toilet problems meant that I was in a lot of pain when having a bowel movement, usually diarrhea and the pain was nowhere near my bladder. A CT scan showed nothing.
Referred to Gastroenterology
So, I went back to GP in tears. I was working from home because I can't travel and feeling truly isolated and like everyone thought I was just dramatic. Any excursions out of the house exhaust me and I end up in a lot of pain [stabbing right sided specific location (ovary?) and back/hip pain and general cramping]. I insisted on being refered to a GI. Several weeks later, the GI saw me. He was the first person who listened and seemed to care. I told him about my symptoms - realising that very thin stools was not normal and he wanted to test me for Crohn's Disease. I had an endoscopy, colonoscopy and an MRCP (to check for gall stones in my bile ducts since I had my gall bladder removed in 2011). Nothing apart from a few benign polyps in my rectum were found. He thought I needed to go to see a gynecologist.
Full circle - referred to Gynae again
A different doctor this time (phew). Who listened and said that the GI had flagged that I could have endometriosis. He also wanted to check for PCOS and was annoyed that my last gyne did not take any bloods. The blood I got taken last week showed normal levels of hormones and showed that I was not menopausal (I am 37). He did an internal examination and said I was inflamed down there but he could not feel any nodules of endo. I am now booked in for a laparoscopy on 15th Aug.
What if? What next?
So they think maybe endo, but the gynae doesn't know because I am not having periods due to the coil. So it is possible, but I have had so many negative results from other departments, I feel like I am losing my mind. I am depressed and I don't know what I will do if the lap comes back as clear. It is no use having a full bill of health if you can't function due to pain and exhaustion. Is there anything else I can check is this is negative? I really hope that perhaps some of you who have been through something like this can offer me your experiences so that I can cope while I wait for this hell to be over.
Summary of current symptoms:
- no periods but spotting due to Mirena
- pain in lower right quadrant right over ovary. Sharp/stabbing/intense
- lower back pain, right hip pain, right rib pain
- bruised feeling on right side
- blood and protein in urine
- painful bowel movements
- diarrhea and constipation
- depression and insomnia
I am currently taking codeine (60 mg 4 times per day) amytriptaline (20 mg per day)nparacetamol and ibruprofen max doses. The hot water bottle is my friend.
I feel I have a high tolerance for pain. I gave birth with no drugs. It hurt, but I coped.
Thank you for managing to read to this point.
All the best to you and I hope your journeys are going smoothly.
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