My story : Hi ladies, It’s been a long time... - Endometriosis UK

Endometriosis UK
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My story

Nikki84
Nikki84

Hi ladies,

It’s been a long time since I posted anything on here and I see a lot of new ladies on here so I thought I would share a bit of my story in the hope that it helps someone.

I have suffered with my cycles from the age of 11, I am now 34yrs old, I never new anything was wrong, after many doctors visits and test, I was told at 16 that I had PCOS.

I met my husband 10yrs ago and shortly after this we were married and started trying for a family, I new this was going to be difficult from the start because of the PCOS and the fact at this point my cycles would go on for months without a break.

I asked my doctor to refer us to the hospital for fertility tests right at the start because of this, after many tests I was told the same thing, to go away and loose some weight and there would be no reason why we can’t get pregnant on our own, after many years of trying and getting nowhere, we asked again for help, at this point we were given Clomid and sent on our way again, we were not monitored on it or given any other help, they just kept telling me it was because of my weight and PCOS which I new wasn’t true.

Many years passed and I had done everything they suggested, I lost the weight, changed my lifestyle to a more healthy one and still nothing, I told them how can I be ovulating if I am on my cycle all the time and loosing weight did nothing to change my body, we then had several more failed Clomid attempts.

Approximately 4years ago, I had enough of being fobbed off by doctors, nothing had changed, I was still constantly on my cycle, not ovulating and at this point I was crippled by the pain.

I made an appointment with a private fertility clinic and the process began of being tested.

When all that came back clear we agreed to give Clomid another go and this time they monitored me on by constantly scanning me, I had no idea that this was supposed to be done in the first place when taking it, they used to just send us away with a prescription!

After a few attempts it was clear I was not ovulating and we agreed to give IUI a try. This is when everything changed.

One morning I set off in the car to the clinic to be scanned and collect the drugs as my cycle had started, my husband was in work so I had to go by myself, which was fine, it’s only a scan and they were going to show me how to inject myself with the hormones.

When I got there I was excited to actually be trying something different, it was a bank holiday weekend so my normal doctor wasn’t there, I was called through and they began to scan me, my face dropped, I could tell something was wrong, I was told they had found a shadow on my ovary and they didn’t know what it was and I would have to wait until the Tuesday after the bank holiday to see the doctor, from that point it felt like everything was going in slow motion, driving home on the Motorway tears streamed down my face, all I could think of was I had the C word, the next few days seemed to drag and finally we were back to see the doctor, this time I wasn’t alone.

He scanned me again and I was told they think it’s fluid in my tube but they wanted me to have a LAP so they could see what was going on, at this point he told me he thought it was Endometriosis. I had no idea what it was but the relief was overwhelming.

A few months had pasted while we were waiting for the LAP and things were getting a lot worse,I was back and two to the emergency room screaming with the pain.

After several trips I was admitted for IV pain relief but to this point the pain was so bad it felt like I was being electrocuted by my own body, the spasms were coming thick and fast, it got so bad I remember being shook awake by several nurses and doctors because they thought I was fitting and that’s when it happened, nothing!! I could feel nothing from my belly button right down to my knees........

I have never felt so scared in all my life I had no idea what was going on and neither did the doctors.

Over the next two years I spent months in hospital learning to walk again, they did test after test and I was told I have this, that and other but they really they had no idea what was going on with body.

Because of all this my Lap got put back a few times because they didn’t want to take any risks with my body until they new I was stable enough to go through surgery.

19th July 2018 I was finally ready for surgery.

After waking up from 7 hours of surgery my doctor came to see me.

You have stage 4 Endometriosis, your bowl and surrounding organs were fused together like a brick and compressing your nerves.

OMG for over two years I have been in a wheelchair with people caring for me because I couldn’t feel a thing from the waist down, my hole life was turned upside down being told I had this, that and the other when all along it was the Endometriosis.

I can’t even begin to tell you how much my life has changed over the past few years, I have no idea or the doctors weather I will get the use of my legs back, the nerves were compressed for so long they don’t know if the damage is permanent or not yet.

But one thing I do know for sure is I will not give up! I will keep fighting!

Thank you for getting this far if your still reading this.

I hope this helps and just wanted to let you ladies know that doctors don’t know everything and if you think something is wrong, you keep fighting until they listen.

All the best and good luck ladies x

12 Replies
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Oh my word @Nikki84

I don’t know what to say, you’ve been through so much and I can’t begin to imagine what you’re still dealing with.

Hats off to you, you’re a friggin’ trooper woman 🙌🏻💕.

I hope you get all the answers you need and the best treatment on offer, I’m wishing you a full and speedy recovery.

I’m genuinely gob smacked at your story and yet it’s so common for female related illness to not be investigated thoroughly at the right time.

I’m so sorry you’re going through all this.

All the best xx

Nikki84
Nikki84
in reply to vmagpie

Thanks for the reply, because there has never been a case report like mine, it made it very hard for doctors to find out what was going on, neurologists had me convinced I had a functional disorder, which is my body’s way of dealing with pain is to shut part of the body down, I wouldn’t have known any different if my specialist hadn’t done surgery and found everything he did, as much as I want to be angry with the doctors and specialist for miss diagnosing me, I suppose they couldn’t have known if there is no recorded case of it happening before.

That’s very true, and I don’t like to slate the NHS as I think we’re very fortunate to have it.

I really admire the outlook you seem to have and I guess there’s no point wasting energy on anger.

Really wishing you all the very best with your future and health 💕xx

Nikki84
Nikki84
in reply to vmagpie

Thank you, I was very angry for a long time and frustrated with my situation but over time I have started to let go of my anger and concentrate on rebuilding my life(wheelchair or not).

Literally cried reading this, everything you’ve been through and you still haven’t given up! Brave lady 🙌🙌 I really do hope everything works out for you Nikki and I hope you end up walking again and pain free!! I think doctors and consultants are very dismissive when it comes to endo! I fought for my first op being told all along it wouldn’t be endo and was ibs low and behold endo was found but because it was only a tiny amount they didn’t believe that was causing my symptoms, but I was symptom free after up until 2 years ago I’ve been back been told it won’t be endo I haven’t got it even though I have irregular periods irregular bleeding bowel and bladder problems and loose feeling in my left leg with some periods, eventually agreed for 2nd lap but I’ll be waiting a while due to my diabetes being poorly controlled right now. Thankyou for sharing your story wishing you all the luck for recovery xxx

Nikki84
Nikki84
in reply to Natalie221

Don’t give up, keep fighting, price the NICE guidelines and take them with if you have to, pester you surgeons PA if you have. Nobody knows your body better than you, it just really sad that as women we have to fight for this stuff, good luck and hope things get better for you x

Natalie221
Natalie221
in reply to Nikki84

Hopefully I’ll get sorted soon but my Hba1c is too high so too dangerous to operate right now 🤷‍♀️Good luck to you too thankyou Nikki xxx

Nikki84
Nikki84
in reply to Natalie221

Just wanted to point out one thing my specialist always said to me.

You can have the tiniest amount of Endometriosis and be in agony and you can have stage 4 with no symptoms, every case is different, don’t forget that x

You are inspirational Nikki84 ❤️

Thank you for taking the time to write this! I just can't believe what I have read. I really hope that things improve for you now! You have been through so so much. Please keep us up to date with your story and let us know how you get on. Im sure you will find much love and support on this forum 💞 X X X X

Oh my goodness you poor thing. The problem is still going on with girls not being diagnosed early even tho endo is becoming more and more common. I really hope you get results and help and just keep pushing and pestering. Good luck my friend x

<3 what a story! I'm glad you finally have your diagnosis Nikki and hope things are on the up for you #FightLikeAGirl - I'm awaiting a second opinion at a BSGE centre just now as I too have stage 4 with organs stuck together. Here if you wanna chat/rant/listen <3 take care xxx

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