Not getting anywhere


I was diagnosed with endometriosis about 6-7 years ago and in this time I have had so many treatments, operations, other illnesses, symptoms and a roller coaster of a ride. I am currently 25.

I have had chronic pain, heavy bleeding and tiredness ever since i was 14 years old, I had all the tests done and came back with endometriosis, after that I have tried 5 different contraceptive pills the best being yasmin however this caused problems such as constant bleeding and eroded cervix. I have tried prostap and HRT which worked very well but was obviously only for short term and found that it caused achy bones and hot sweats but was worth it. I have also tried depo provera I hated every minute I was taking it, it made my mood swings unbearable I gained a lot of weight and didn't take the pain away. Whilst going through all the tests and medication I also found that I was suffering from low vitamin B12 which I know have 3 monthly injections for and was horrendous because not only was I constantly tired from the endometriosis I was also tired from this and the lack of iron, this also made my tongue sore and passed out several times. After the second laparoscopy I found out that I have IBS which at the time was not very well controlled, this now however is better from cutting out foods that aggravated it and staying away from things that caused high amounts of stress. Through all of this I have still managed to work I struggled a little through university which showed on my grades but still passed eventually. I have been back and forth to the doctors ever since and have had regular check ups at the hospital. All together I have had 4 laparoscopy's to get rid of the endometriosis, countless swabs, cervical screening, blood tests and feel it is still getting worse.

So in march this year my gyne thought it would be a good idea to try the mirena coil as another form of treatment whilst conducting my fourth laparoscopy however since the day I have had it I have had nothing but trouble, constant bleeding, horrific cramps to the point where I cant move, extreme tiredness, headaches, dizziness, fainting and pale and dry skin. I have also started prostap again which normally works to settle things but this has not made any difference I am also on HRT again. After my operation I found that my womb was tilted which has not even been discussed with me I have no idea if it affects anything or what issues it may cause. It took me at least 3 months to feel a little better from the operation and was able to work full time hours again however I am struggling to concentrate on my job whilst I am in pain or tired I find this very difficult luckily I have had great support from my assistant manager and the HR team. What I am also finding extremely difficult is being in a new relationship, there has certainly not been any honeymoon period! i find sometimes sex is painful, I bleed after and also found it uncomfortable when sitting down. I have been back to the doctors 5 times, the gyne twice and the emergency doctor once since having the coil who gave me mefenamic acid but didnt work and I have been told it will settle down in 3 months now 6 months and also 9 months. I am pretty sure that since having the coil it is also causing symptoms of BV infection but cannot have swabs taken because the bleeding is too bad. When I visited the gyne this week he told me the endometriosis is growing along with adhesions have become extensive and there is not much else they can offer me so have to suffer until it settles, he also said I could take morphine for the pain but will have no quality of life (not that I have much now) I have been advised to be referred to a pain management clinic to find what is best for me I have tried naproxen, co codamol, tremadol, paracetamols, ibuprofen, heat rubs and nothing works.

I am still not certain on a decision about having my own family but feel that I am having to think about it quicker than I would have liked, I guess I don't want the choice to be taken away at a young age, I am worried the longer I leave it the harder it is going to be which I know is an issue with endometriosis anyway.

I was wanting to know if anyone else has been through anything similar and if you have any advice please?

2 Replies

  • Hi - I am so. so sorry for what you have been going through. Can I ask if you are being dealt with by general gynaecology in a local hospital who have said there is no more they can offer other than morphine? If so can you advise what area of the UK you are in? x

  • Hello thank you for your reply.

    Yes it is a general gyne from my local hospital in grimsby.

    This was the first time any pain relief was mentioned with this gyne and morphine was the first option he briefly mentioned others and quickly mentioned about a pain management clinic but im not fully sure of how to do this x

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