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Endometriosis awareness month.....My story

I started my periods at 13 years old. They were extremely heavy, irregular and painful. As I got older they didn't get any better so I was put on the pill at 17 to try and regulate them. They were still very heavy and painful. I just assumed that was the same for everyone!


At 22-24 years old I was experiencing random bleed outs during sex which was highly embarrassing but thankfully my now husband was very understanding and we generally laughed about it.
It became less funny though when I started getting a lot of pain during sex and acute pelvic pain deep inside.

I was finally referred to gyne at York aged 25 where they decided to book me in for a laparoscopy. I was diagnosed with stage 3 endometriosis.

We decided not long after this to try for a baby. We tried and tried but nothing was happening. I was ill all the time and exhausted. I had my tonsils removed but still I was exhausted all the time.
When we were managing to try for a baby I was having to direct my husband to certain angles so I wasnt in pain or at least not as much during sex. Again he was very patient with me and we just laughed together and made light of it.

Aged 27 I was diagnosed with M.E /CFS (chronic fatigue syndrome) and we already knew the endometriosis would make it difficult to get pregnant so after nothing happened for a couple of years we were referred for more tests.

Tests came back ok for me other than what we already knew with the added cysts on my ovaries and Andi's came back low and slow! So basically our only chance of a baby was with ICSI (more expensive version of IVF)
The beginning of 2010 I was 29 now we had our 1 free go at ICSI but it didn't work.
There was no way we were going to be able to afford another go so we essentially gave up and decided to do other stuff.
Just over a year from the ICSI not working I was now 30 I felt ill a lot and had terrible indigestion!!
My period was always late so I was not expecting to be told I was pregnant.....and naturally!! We were shocked, surprised and thrilled to bits.
After being told categorically that we would NOT get pregnant naturally due to our joint problems. Here I bloody was 6 and a half weeks gone!!!


So don't give up ladies! You too could have a crazy 5 year old like mine!
I was lucky and had a pretty easy going pregnancy. However I did get a lot of pelvic pain and back ache and a lot of my beginning labour pain was in my back.

After birth it took quite a while for me to let my husband back in!!!! We tried but it was too painful so we waited and tried again. I think Murphy was about 14 weeks before I could manage. It became easier but there was always an element of discomfort and just when you think you can relax the worng angle and yowch!

I went back on the pill as I now actually needed a contraceptive after not using one for 8 years!! It was the mini pill and I was bleeding constantly then not at all then badly. I was all over the place again. So I decided to stop. After stopping I felt better in myself (less miserable) and my periods became normal and every 28 days. It was awesome! I even could relax during sex. Yippee!! By this point I now realise I'd totally forgotten about the endometriosis.

I was now 33 and we decided with our track record we would try for another baby. We'd said from the start we wanted to have another once we knew we could do it.
To our shock after just 5 months of trying we'd done it I was pregnant again. Only this time some part of me didn't feel happy about it because something didn't feel right I didn't know what but something. Then my boobs stopped hurting which was weird and just before my 12 week scan I started spotting. Again weird I had nothing with my first son.
I went for a scan and was told my baby hadn't made it past 4/5 weeks but my body had carried on with the pregnancy.
A couple of days later thinking I was ok I went out on the hottest day of the year with a friend and the kids and ended up bleeding out stuck in a cafe disabled toilet in white shorts!
An ambulance ride later and a stint in York hospital I came home.
Two weeks later I had awful pain in my pelvis I felt faint and nauseous. Back to hospital with suspected infection. No infection was found but I was given antibiotics anyway and a load of ibuprofen.

After this I was not to be the same again. In the last nearly 4 years since the miscarriage  I have suffered with more and more pain. PTSD, anxiety and depression from the miscarriage and just felt I was getting progressively worse. However it wasn't the same as before and all the pain wasn't during my period it was in between. I was also bleeding in between so more and more tests done all of which were normal. My periods were mostly on time, not overly painful or heavy so I did not think it was the endomitriosis but neither was it even brought up by any docs! Even all the gyne ones doing the tests!

Just before my 36th birthday I started with pain in my left ovary where I knew there was a cyst from all the tests I'd had done from the random bleeding. It got worse and worse. Doc was pretty sure it had burst.
It was after this all the pain in my back and legs started to get worse and more frequent and last longer.
After a particularly painful do I went to the doctors convinced I must have done something to my discs in my back like my brother and sister so I was sent for an MRI.
Again nothing so I must have Fibromyalgia as well as M.E the doctor decided.

The pain during sex, contraction pains during or after sex and collapsing have become more and more frequent in the last year and the latest one has not subsided at all.

This is me the other week after what I thought was a Fibro flare up (but I now know different!)
I had washed my hair. Got contractions in my back, pain in my legs. Couldn't walk, felt so nauseous I was nearly sick and was blacking out as my husband managed to get me into bed where I laid in excruciating pain with him unable to touch me to help me.
I spent 3 days stuck in bed with this flare up and been in bed everyday at some point since due to it not calming down.

My husband and I have both ended up using google is your friend!!
Last week whilst discussing my symptoms at the same time we said.....do you think it could be endometriosis?

More googling and more reading and I realised that lots of women were having the same pain in their back and legs, and getting numb legs.
Armed with this and the fact it now felt like someone was trying to rip my ovaries out we were probably right! Why had I not thought of this before? Why had no docs thought of this before?

Trip to docs to be told yes you are most likely spot on and here's the contraceptive pill! .....what? is that it?
Came home asked for some advice online and stewed a bit. Ended up nearly ringing 111 with the pain so made another appt at docs this time with a female and armed with my extra info from the official endometriosis website she agreed to do the tests etc so I can be referred to gyne again. So I am now junping through hoops whilst in constant pain with the worry I will black out/collapse whilst doing the school run and scare my son even more than he already is with mummy being ill all the time!


I've also talked to my mum and she and my nanna had an hysterectomy at my age due to problems. Could they have had endometriosis too and not known?! Makes you wonder!
A couple of friends have come forward to say they were also my age when they had hysterectomys for endo and it was the best thing they ever did.

Could I get some life back if I have a hysterectomy too? But how long will it take on the current declining NHS? Its £7,500 to go private!

I'm now waiting for an ultra sound, going for swabs and have to try the pill for while! Just to get to see the gyne where I do intend to ask about a hysterectomy. We have our lovely son and we decided a year ago we aren't going to have anymore. With our past the likely hood is slim at best and probably full of more pain and hell!

So my story started at 13 years old and continues at 37!!!!



Comments

Lennie Kanaris said…
you’re so brave. i know how much you fight every day, and even still I know I don’t even know the half of what you go through. You’ve come very far, murphy is a very lucky boy to have you as his mom. you’re inspirational and a fighter. i do hope you get the answers you’ve been fighting for for so many years. big hugs x

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