I'm new to this forum, and would love to chat with some of you endo sufferers, just basically to see if my symptoms indicate endometriosis, and whether you guys have had similar experiences!
So basically, I started my period at the age of 15. They were never too painful - I got cramps and everything but they weren't anything that I couldn't cope with by taking a couple of painkillers. Around the time of starting my period, I noticed some pretty strange symptoms which appeared to be related to my stomach, such as extreme nausea, migraines, constant tiredness, a funny tummy (I'd have diarrhoea a lot more often than others), uncomfortable bloating etc. I distinctly remember going on holiday to Disneyland Orlando and being so unbelievably sick. I would have panic attacks every time I ate, because I'd gotten it in my head that my stomach was going to reject everything, I passed out at least once a week and I generally felt very unwell. I went to my doctor when I got home and was referred to a private hospital who did an ultrasound of my bowel and also an MRI scan, which both came back clear. After that my doctor was convinced that I was gluten intolerant, and that if I saw a dietician and cut gluten out of my diet, then my issues would all go away. So I did this, and for around 6 months after that, my symptoms seemed to be more under control. They were still there, but I felt a lot healthier in myself. At the same time as all of this, I started to notice that my periods were getting very irregular. I would come on at totally random times during the month, even if I'd already had my period that month. And some months I wouldn't get a period at all. Also, when I did get my period it was a hell of a lot more painful. Sometimes I'd be in crippling pain where I couldn't even stand up - it would feel like somebody was stabbing my lower stomach and back over and over again.
At some point in the next few months, I accidentally ate something containing gluten which didn't seem to trigger my symptoms at all, so I just reintroduced it back into my diet. I now consider my stomach problems as pretty normal and manageable - I'd say that maybe I suffer from a bit of IBS now and then, but nothing serious.
I became sexually active at the age of 17 with my first boyfriend, and was put on the pill (Rigevidon) which I found hugely helpful with regulating my periods. I'd take the pill everyday for three weeks and then have my week break where I would have my period, and I haven't missed another one since. The painful period pains that I started to get a few years back are still very much there, and I'd say that they have worsened. I am now 19 years old, and with a different boyfriend. Within the past 3-5 months, I've noticed a lot of worrying symptoms, causing me to think I had cervical cancer at first. Around 2 months ago, my stomach was playing up an awful lot - I'd need to rush to the toilet multiple times a day, and sometimes I could see blood in my stool (sorry TMI). I was also bleeding as though I was on my period, every single day, got super worried and went to the doctor when it got to the point where I was bed-ridden with stomach problems, exhaustion, nausea and weakness (I couldn't stand up without collapsing), and was diagnosed with a bladder infection. After a week on the antibiotics, I felt a lot better, but some symptoms were still there (e.g. the bleeding (relatively light most days, sometimes a brownish colour but when I wiped, it was clearly blood, I was starting to get searing pain when I was having sex, and then stopped having it because it was hurting so much and I was bleeding so much etc.). I was sleeping pretty much all day, and still am. I have constant pain (almost like a permanent dull ache in my lower stomach, more to the left side, that has episodes where it turns into stabbing pain). I saw a doctor, did a blood test and sent of a stool test and nothing was flagged up. This doctor however did say that she highly doubted that I had just suffered from a bladder infection, and that I was essentially misdiagnosed. I had none of the typical bladder infection symptoms, such as pain when urinating etc.
Around a fortnight after the bleeding symptoms really became noticeable, my nurse changed my pill because of my excruciating migraines, and put me on the mini pill (Cerelle). The bleeding has continued every single day, as have the other symptoms. I get waves of nausea multiple times during the day, and have painful bowel movements very often. I can't even say when my last actual period was, because I've been bleeding everyday, some days heavier than others, but I haven't noticed a streak of 5/6 days of heavy bleeding, so I'm really not sure if I've even had a period for a couple of months.
I have literally been living at the doctors recently - I've had a full STI check (I've only been with two people anyway, both virgins before, so highly unlikely), I've done a pregnancy test (negative), as I said I've had a stool test and a blood test too. After completely breaking down in tears with my doctor the other week, she suggested endometriosis as a possible diagnosis. I had an internal examination there and then, where she just looked at my cervix, and from what she could see, she said that it seemed pretty normal. I am however booked in for an ultrasound next week, and am seeing a gynaecologist the following week, and am really hoping for an answer to all this pain and mystery sickness. So that's where I'm at at the moment. I'm typing this laying on my bed with a heat pad on my stomach, and bad pains, preparing myself for multiple appointments next week.
EDIT: a couple of extra things I forgot to say!
- My cousin was diagnosed with endometriosis a couple of years ago
- I've been tested for ulcerative colitis, Crohn's disease etc. and these have been ruled out
- My doctor told me to take two of my birth control pills (Cerelle) per night to try and stop the bleeding, but I've been doing this for two weeks now and there's been no change in the bleeding at all!
If you read all of this you deserve a medal and I thank you so much for taking the time. Please could you tell me if my experience sounds like endometriosis, or if I have some similar symptoms to you etc. I'd love to hear opinions. I haven't been in good health for years now, and as a 19 year old university student, living 3 hours away from my family, this is a horrid and scary experience for me to be going through alone
Thank you so much in advance! Hope you're all well xx