My Story

[Lully]

Ever since I started my periods from the age of 12 I have always suffered with them. For the first year or so I would get the odd pain and I would throw up but then they just disappeared. Then when I turned 14 it was as though they had come back with a vengeance, I couldn’t move because of the pain, if I did I would throw up or even sometimes I would pass out, my periods were so irregular and heavy, and when I say heavy I mean that in the heaviest way possible.

I was put on the pill to try and help alleviate the pain which it did do until my body must have got used to the hormones or something, as by the age of 16 I was back to square one in excruciating pain. I went to the doctors where they changed my pill to see if that helped, I am not going to say it completely worked but it definitely kept most of the pain at bay. As the years went on I was finding myself with at least one water infection every two weeks, it was so frustrating I was doing everything the doctor said but nothing was making them go away. It was a living nightmare.

As my sexual relations begun I knew something was up, i was in absolute agony I couldn’t even have sex without crying, I would also be in pain for days after. I confided in my Mum where we went to the doctors to explain everything, I was referred to a gynaecologist where pelvic examinations were beyond bearable, I would lay there with tears streaming down my face, but I just wanted to get to the bottom of it. After a few visits they decided to put me in for a laparoscopy where they could have a look to see if I had endometriosis and if I did where it was growing.

I prepared myself for the day surgery but I wasn’t too sure if I had prepared myself for the pain after. Once I had come round the doctor informed me they had found little piece of endometriosis tissue on the top of my womb and on my left ovary, he insured me that it had been burnt off and I should be okay in a few days.

A year on and unfortunately I still am suffering big time. I have been told to stay on the pill for 3 months straight with 1 week break and to take menfenamic acid tablets from day 1 to day 7 of my period to help reduce the pain. I suffer horrendously with reoccurant water infections, and extreme constipation. I underwent a cystoscopy over a month ago and have already had two infections, so clearly that didn't work. It makes me so embarrassed as I can't be a normal 21 year old, I cant drink alcohol without horrible side effects (extreme water infection), I can't have sex and I can't move from my bed when I get my periods. It really does get me down. Nothing in my lower region works properly because of this horrible condition, but I can only be strong and get through it.

Some days are better than others, but unfortunately I think this is how it is going to be for the rest of my life. I am just hoping I haven’t left it too late for children. I am only 21 but you never know how strong or severe the endometriosis is going to come back!

Does anyone else have similar symptoms?

[hyponp]

Sorry to read about your pain.

I was diagosed whilst at uni when i was 19 over 20 years ago and at times endo can take over your life.

I have mainly remained on the pill constantly to totally stop my periods as that is the only thing they can do for me but unfortunately the endo has come back.

I hope that you keep on fighting this and get some relief soon, i also looked at my diet and a good book is Recipes for the Endometriosis Diet by Carolyn Levett. Last year i cut out wheat, gluten and almost dairy so maybe try this?

Take care and be strong.

[Lully]

Hi hyponp, thank you for commenting. I was diagnosed when I was 18 just before I came to uni, so it has completely ruined my experience in not being able to keep up with housemates when they go clubbing every night and drink excessively because I always end up in agony. I am in my third year now and finish in May so I am hoping when I am home more things can be done to help me!

I have even tried to not have periods but when my body needs a break it just bleeds even though i continue to take the pill and the pain is still the same - such a viscious circle isnt it? I am lactose intolerant anyway, in the sense I can eat minimal dairy but any excessive use and I am very poorly.

I think I will try that - thank you for your help. I hope they can help you some more by getting rid of the pain and hopefully keep the endo at bay! You are very strong to fight it this long!!