Living With endometriosis


First of all let me start off by saying thank you for reading my blog and let me tell you a little about myself, My name is Nikki I am 33yrs old and I have been married to my amazing/patient husband for 7yrs, I started my cycle at the age of 11yrs and there was something wrong strait away, I new that things did not feel normal, my cycle’s were very heavy and I would bleed for months at a time with no break and they were very painful, it felt like a dull ache and I would feel really sick, over the years I would go back and to the doctors and get told that everything was normal and things would settle down over time, or they would have to give me drugs to stop the bleeding because it was making me anaemic but yet still they keep saying nothing is wrong. at the age of 16yrs I was then diagnosed with (PCOS) poly cystic ovary’s and they tested my tubes which were all clear (thank god).

In 2008 I meet my husband, when I first met him I new he was the one for me, he is 10yrs older but that didn’t bother me, he is a very laid back gentle giant who is very protective of me which I love because I know this means he loves me completely, and he is a amazing dad to his son Luke. It was not long before we moved in together and decided that we wanted to start a family together but I new this may be difficult with my PCOS so I went strait to the doctors and asked to be referred to the hospital gynaecologist because I new getting pregnant would be difficult, I was write, over the years nothing was happening and we even tried 3 rounds of clomid because I was not ovulating with my cycle being all over the place, then I 2015 we decided to go private as we were not allowed any treatment on the NHS no more because we had my step son which was very upsetting as we didn’t have much money and very unfair, so we paid to go and see a specialist at Liverpool Women’s Hospital, they were fantastic, they re-did all the tests again which came back fine apart from the PCOS and not ovulating, so we decided to start on the cheaper option first, which of course was the clomid again, after a year or so on that nothing was happening, I was still not ovulating, we then decided to try IUI as we could not afford IVF, IUI was still a lot of money at £1000 a go (steep I know) but we had nothing to loose by trying, so it was decided on my next cycle I would go in one day one for a scan and they would give me the same drugs they use in IVF to stimulate my ovary’s, the day came when my cycle started, my husband was working so I had to make the 30minut drive down to the hospital myself, it was a bank holiday weekend so not many people were about so it was a joiner doctor that had to do my scan, that’s were things started to go wrong, he found a shadow on my left ovary and he didn’t know what it was, he said we could not start treatment until it was dealt with and I would have to go back on the Tuesday after the bank holiday, let me tell you that had to be the worst weekend of my life, I drove home from Liverpool by myself crying my eyes out thinking I had ovarian cancer (the risks of this are high when using clomid), the Tuesday came and we seen my doctor who did a 3D scan, he then asked me if I had herd of Endometriosis, I had herd of it but did not now much about it, he said he couldn’t be sure without doing a laparoscopy but he thought that might be the problem, he said it looked like my left tube was full of fluid, things then started to move really fast, that same day he had me sign a consent form for the operation, he asked me to agree to remove the left tube and ovary if it was blocked as it was no good to me if that was the case. (I felt like my world had come crashing down around me that day).

the operation was set for February 2017, it felt like the time was going very slow and we were waiting forever for the day to come and since the scan the pain was getting really bad, so much on one occasion my family had to ring a ambulance because I was screaming in pain, I was kept in hospital for a week and sent home on morphine while I waited for the operation.

so we are finally here the day of the operation and I am totally scared about what is going to happen, I have to say the staff at the hospital were amazing at keeping me calm and talking me through everything, last thing I remember is going to sleep and then waking up in HDU, I was in and out of consciousness all day, the drugs they had given me were really strong, at one point I remember my doctor coming to see me and telling me that he had to remove the tube and ovary, I cant remember what else, later that night he came back to see me as he new I would not have remembered what he said, it was only then that I realised the extent of the damage (STAGE 4 ENDOMRTIOSIS) he started by telling me that the whole of the left side was covered in cells, he said it was so bad that he did not even recognise my tube, he removed my left tube but could not remove the ovary as it was fused to the back of my whom and bladder with a 61/2cm chocolate cyst which he was only able to drain and my colon was also fused, on the plus side he said my right side was in really good condition and he managed to clean up some of the cysts off my ovary from my PCOS and that there was no reason why we can not try to get pregnant strait away as this would be our best shot, but he did have to refer me onto a advanced endo specialist as I will be needing more surgery on my bladder and bowl.

This was like the best and worst news rolled into one, I didn’t know weather to be happy or sad I was so confused and my hormones were all over the place after the op, after 48hrs in HDU I was able to go home, recovery was slow but the first week was fantastic for the first time in years I was pain free, I was feeling hopeful, that did not last long, after the first week the pain came back even worse and I lost total control over my bladder (they are not sure if this is to do with the endo or because of my disability, I am currently in a wheelchair but that is a blog for another day as I don’t want to bore you to much on the first page) so I ended up back in emergency were they did a scan and found that I also now have Adenomiosis (which is different from endo but basically means the cells are pushing through my Uterus and into the muscles) so now I am all kinds of pain killers, morphine patch, liquid morphine and a whole host of other drugs.

I am now waiting for my appoint in September with the specialist Mr BOTRO’S he is meant to be really good (we will see) and find out what happens next with my surgery.

this is a disease I would not wish on my worst night mare, myself and my husband have been through hell and back with this.

1 in 10 woman suffer from this disease, yet little is known about it and there is no cure for it, that’s 176millon women world wide. I am currently talking to other women going through the same thing on a app called HealthUnlocked which has been really helpful to know I am not on my own and you can lots of advise from there on things that have been tried and tested by women with the disease.

Useful Links:

Day of pain 

So today has been really bad, I ran out of my morphine last night because of a mix up with chemist, so I was sat in the doctors this morning crying I was in so much pain, I really don’t understand how this disease is so common yet no one has heard of it until themselves or someone they know end up with it, and if it’s so common and been affecting women for centuries, why is there no cure? 

I am feeling very sorry for myself at the moment for letting this get the better of me, it has cost me a job I really enjoyed and I don’t even want to think about what it means for me getting pregnant, I just hope this specialist I go and see in September knows his shit.

Sorry for the rant, would love to read others comments and views on the disease.

Well wishers to all!