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Endometriosis UK
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Reflecting on recent diagnosis - how I got here

I'm sorry that this post might be a bit of a rant. I'm still feeling quite under the weather after my lap 10 days ago, plus I'm pretty sure I've got an infection in my belly button. That said, there are some positives. I'm also sorry that this is so long!

I'm obviously worried about the implications of what endometriosis is going to mean for me and my partner in the future. Is it going to have an effect on whether we can have children? Am I going to continue having pain, or worse, will there be even more pain in the future? How is it going to affect my work?

All valid and, I think, understandable questions, but although I can speculate, worrying is only going to make me panic!

On the positive side, I'm so, so glad to finally have a diagnosis and to know what's been causing all my problems. I started my periods when I was 12, and my mum had always prepared me that they could be painful and unpredictable, so I just accepted it really. Although I can remember dreading each month when I knew my period was due. I always knew when it was due because I always had ovulation pain as a warning! Alongside the pain I also suffered predictable and horrible cold symptoms every month, without fail, which made me feel especially rubbish. I also experienced flooding, which when you're 12/13 and surrounded by unforgiving school boys and girls is the most mortifyingly humiliating thing. I used to wear two nightime pads at all times, and I would still bleed through them, often onto my school uniform or one time, I remember with horrific clarity, onto a chair in high school assembly :(

I also struggled with pain when opening my bowels or going for a wee, and when I was about 14 (or so my mother recalls) I was diagnosed with cystitis, fatigue and Anaemia. My GP, who was very understanding, put me on Tranexamic Acid to help with my heavy periods and referred me to a gastroenterologist, suspecting that I might have a gluten intolerance.

My experience with the gastroenterologist was one which has been burned into my memory and I wish I had the opportunity to go back to then with the information I now have. He literally laughed at me and my mom, and told us there was absolutely nothing wrong with me apart from him believing I was depressed and lazy because I didn't want to go out with my friends. I can remember telling him at the time that the reason I didn't want to go out was because I felt so awful, tired and in pain.

So, after that, I just lived with my symptoms, no one ever considering endometriosis.

At 16 I decided to go on the combined pill for birth control, and it was amazing! My periods were still heavy, but no more flooding, and no more cold symptoms once a month! It was like a miracle pill and I loved it! Then, in 2006, the family planning clinic decided that they wouldn't give me the combined pill anymore because I have a family history of heart disease and apparently new research said it was contra-indicated. So, I was changed to cerazette, which made my periods heavier and more painful than they had ever been, then the contraceptive implant, which caused one long heavy period for months, then finally, the mirena coil, which lasted about a week, with me literally writhing in pain and flooding to the point where it was removed as an emergency on New Years Eve. Having tired everything, I was put back on the combined pill and harmony resumed.

A few years ago, whilst still having fairly heavy, painful periods, I started to have excruciating pain in my right leg, which radiated through my groin, hip, thigh and down to my knee. I could barely walk! I started having random bouts of this, which lasted a couple of a weeks at a time. My GP thought it was sciatica, although he did some tests by stretching my leg and aiming to stretch the sciatic nerve, which apparently showed that it wasn't sciatic. However, he just prescribed me codeine and naproxen for pain relief.

It wasn't until last year, when I had another bout of this leg pain, followed by intense pain around my right ovary that I started to suspect they could be related. I'm convinced that this was actually a cyst rupturing, with hindsight. I saw my GP at the time, who suspected a UTI and prescribed my antibiotics. He found blood in my urine but no sign of infection, but he had no better suggestion. When the pain came back a few months later, I went back, and saw a female GP, who was the first person to ever consider endometriosis, but only when I mentioned it first. She referred me to a specialist, and that's how I got to where I am now.

Now that I know endometriosis might have caused or played a part in all of that, it's a comfort to know that it wasn't all in my head. But it also make me wonder if it might be related in some way to my other problems/diagnoses or Restless Leg Syndrome and Raynaud's Phenomenon? I wonder.

1 Reply

Oh wow bless ya you have been going thru it! Thank you for sharing your story with us and no need to apologise at all!

Unfotunately endo is a horrible thing and yes it will mean continued pain and maybe more pain and it may affect your work. But for some it doesn't. It is an individual thing. For some a full hysterectomy is the answer and they never look back. Others it makes no difference! I wish I had a brighter picture and better answers! Re fertility...again in down to individuals. Some women with endo have no problems, other struggle it takes longer and some can only do it via IVF or not at all! It a case of trying for a bit and then going to your GP if not successful to get referred and the tests started. They say give it a year of trying but if you are older late 30's then go after 6 months. I am 31 and had waited 15 months before going and have now begun tests, one of which has shown that IVF is my only option.

I know what you mean about it being some comfort finally having a diagnosis! You do begin to think it could all be in your head. That you are being psychsymptomatic and thinking yourself in pain, even though you know deep down that you know your body and it not! It also helps to be able to say to people that an op or a specialist has diagnosed it! That way you know that people are not thinking you are making it up as that is how it feels with those who just don't understand it, due to ignorance, no knowledge, not being able to see it!

I hope you haven't got an infection from your Lap. I hope your recovery is quick too.

Once again thank you for your post. Sorry I don't have any definate answers x


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