I'm new here and feel a bit daft posting because I haven't actually got an endometriosis diagnosis. I just want to know what people on here think about my symptoms, as a doctor has suggested that I might have endometriosis and it's never something I've really considered because my periods are regular,and even though heavy, I wouldn't say they were extremely heavy.
So, nice to meet you, and I aplogise for 1. How long this will be and 2. That I am going to massively overshare. If anybody can face reading my huge rant I really really appreciate it!
Here's my symptoms:
I have suffered for limb pain & joint pain for 5/6 years now, and realised a long time ago that it was related to at least affected by my menstrual cycle. I've been to my GP and various specialists many times because of this but it's always for tests/scans looking for arthritis etc. Nobody has ever really given any importance to the fact the pain mirrors my cycle. The worst pain is in my legs- my knees, ankles & his feel like I have tooth ache in them (that sounds weird,but it's the only way I can describe it), and I get an intense pain radiating from my lower back & tail bone, through my buttocks and down my legs. I also get pins & needles in my knees and feet quite regularly. These symptoms tend to begin about a week before I ovulate, geting worse up to and around ovulation, then tail off a bit before getting very intense again for the first few days of my period. The leg pain in particular has got more intense on a monthly basis over the last 6 months.
My period is doesn't last that long (4-6 days) and my cycle is fairly regular (28-32 days), but I get very bad cramping around the time of ovulation, and around the first few days of my period. I bleed very heavily for 2-3 days with quite a bit of clotting then it tapers off. This has been normal for me for around 2/3 years- up until that point I had very heavy and long periods every month. I have always had very bad period cramps, often needing time off in secondary school and college. If anything, my cramps have improved over the last 5 years. I have developed a new kind of period pain over the last 2 years, that feels like cramps but in my vagina and often rectum too, this tends to be throughout my entire period.
I also get UTI/cystitis type symptoms (feeling like I need to urinate constantly but not being able to, burning sensation in my bladder) almost every month at the end of my period, and get thrush type symptoms every 2-3 months between ovulation and my period. I've had thsee symptoms intermittently for around 10 years, but they've been getting more regular over the last 2 years.
I bloat very badly (have a solid, pregnant looking stomach) between ovulation and my period, and get a lot of bowel pain and sometimes constipation. It's also sometimes painful and very tight feeling in my rectum when I empty my bowels around this time. I get very loose bowels from the day before my period starts to around the 2nd day, often with very intense bowel pain at the same time as the usual period cramps. I often get nauseaus at this time too, and sometimes get some dizziness.
Last but not least, I have had problems with breast tenderness for as long as I can remember-my breast get very tender, swollen and hot to touch every month from just before ovulation to around the 2nd day of my period. I can barely walk sometimes without having to wear an extremely supportive sports bra (I normally have quite small breasts and only really wear a bra for vanity-I'm much more comfortable without one and wip it off as soon as I get home). I've had to buy bras in a larger size to accommodate the swelling when it's at its worst. I have had lumps in my breasts scanned several times in the past but I'm just prome to harmless cysts- I get these regularly and they tend to swell with my breasts. I started taking evening primrose oil around 4 years ago and this seemed to alleviate my breast tenderness/swelling,but over the last 6-12 months it has come back with a vengeance. I regularly (every 2-3 months) get what feels like a swollen gland or something similar to the cysts in my breasts in my crotch (the crease between my crotch and right thigh to be exact). I've never been to a doctor as it's always gone down by the time I get round to planning an appointment, but it gets hot and painful just like my breasts.
I have had external pelvic ultra sound scans and ultrasound scans on my breasts and hands. I've had what feels like a million blood tests, a feaces sample test, and countless urine tests. The only thing any of this has every found is a few harmless cysts, occasional anemia, and constant vitamin D deficiency (even a slight one when taking prescribed supplements). I also have a history of UTIs, cystitis, and kidney infections. 6 days ago (3 days before my period) I developed a bad pain in my rectum- genuinely feels like a bread knife is stuck in there, that is worse than any rectal pain I've had before. I went to my GP on day 3, and she examined me and referred me to the hospital for a surgical consult as she thought I had a rectal abcess due to finding puss. After ten hours of sitting around on a very sorry bottom, with intense first day of my period cramps, I was finally examined by the surgeon (I never want a male doctor to have to stick his fingers up my butt again) and he said there was no puss, just a lot of mucus, and that my rectum was very inflamed. He asked me some questions about my history and said he thinks that I might well have endometriosis-I hadn't even realised until he told me that endo could affect the bowel & bladder (even a friend I have who has endo didn't know this!). He has referred me for a colonoscopy and a CT scan of my pelvic area. At first I was a bit shell shocked, as none of the countless doctors i've ever seen have ever linked all of my symptoms together before, and any that have got close have basically told me I suffer from 'problem periods'. I've been reading up a lot since then (am off work because my rectal, leg and pelvic pain is still so bad I've been waking up in the night crying, even after codeine-which I can't take other than at night time as taking it all day would make me constipated, which would make the rectal pain worse) . I'm finishing my period now and hoping that some of this pain is going to subside because I'm going insane.
I realise I can't do anything until the tests come back, but I'm obsessing a bit, I feel almost excited about the prospect of a diagnosis that might make me feel less insane or like I'm an old woman with my constant aches and pains. I don't want to have endometriosis, but at the same time I can't take much longer not knowing what the problem is. I feel guilty all the time for being so useless and always I'll and/or in pain because I feel like I'm no fun anymore to my fiance. Our sex life has definitely suffered with some of the symptoms getting worse over the last 2 years. And this whole sore bum thing is making me feel about as sexy as, well, a rectal abcess.
If anybody has any advice, any similar experiences to share, or any guidance around what I should do to prepare for tests/diagnostic discussions I would be so grateful. Thank you so much for reading this far, I've been needing to just get all this out there for a while and to be honest it feels great to do it even if nobody reads this. I'm not very good at admitting I'm in pain or admittin I can't cope, I think sometimes that's why doctors don't take me seriously, I never get emotional enough in my appointments and tend to downplay the pain a bit out of some weird embarrassment thing. I hope you don't mind that I've made up for that here by telling all to a bunch of strangers.