My story so far........

[Nicci9904]

In July 2011, I was expeiriencing bad period pains as usual. When I went through to get some painkillers, I suddenly felt hot, dizzy and weak, and got the most excruciating pain throughout my whole abdomen. Thinking I was going to pass out, I lay on the floor and asked my 13yr old (then aged 11yrs) to pass the phone, I called my husband then passed the phone to my daughter, telling her what to say, she repeated it all to her dad. He came straight home and helped me up to my bed and called the Doctors.

The nurse came out to see me ASAP and felt around my stomach (it was pure agony) she advised me to take some painkillers and if the pain was no better within an hour or two, pop in and see the Doctor.

Well an hour later I went into the Doctors and he referred me to a surgical ward at the hospital with suspected appendicitis.

After some painful prodding , 2 internals both vaginal and rectal, I was finally sent to Gynae.

There I underwent painful swabs and basically told it deffinetly wasn't endometriosis and it was just period pains, but they were going to send me for a scan.

As I'd been in hospital for 2 days, I thought I would have a scan within a day or two............No! I received my appointment through the post 2 months later.

At the Scan they discovered I had a cyst on my right ovary measuring 8cm and it had dark a dark mass in, on the left ovary, I had a 6cm cyst.

My operation for a laprascopy to remove the cysts was booked for 9th Dec 2011.......then cancelled at 17.45 on the 8th Dec 2011, I was not a happy bunny. It was rescheduled for Friday 13th Jan 2012.....yes Friday the 13th OMG!! what a day to have an operation.

The surgery went ahead.

When I came around from the anesthetic, I realised it was a bigger operation than planned, I was on morphine and could not feel much from the waist down.

The surgeon had gone in with a laparoscopy and come straight out again, preformed a c-section incision, as she had discovered severe endometriosis, it was on my bladder, bowel, ovaries, fallopian tubes and on my lower intestines. The Cyst on the right ovary was an edometriotic cyst and had detroyed my ovary and fallopian tube so they had to be removed. The cyst on the left I was led to beleive was fine and straight forward procedure.

In July 2012 I had my first post op review, not much was discussed and I was told to come back in 6 months.

I rang the department in March 2013 and asked why I hadnt received an appointment. I finally recieved one for May.

When I went back, the consultant was lovely, he explained the operation in a little bit more detail. As you may know, your ovaries are held in place by ligaments, are situated quite far foward and as the are on ligaments, are quite flexible, not mine! my ovaries had basically been stuck solid to my back, and the right ovary hadn't been straight forward as it had been reconstructed!! I was shocked and felt quit disappointed that this had not been explained to me. He then went on to say as I'm only 34yrs, I should have another 20 years or so of cycles ahead of me, BUT, my the future looks fairly glum and I'll be lucky to have 10 years left and even then I'll still have pain.........THANKS DOCTOR!!

He then asked me to come back for another scan as I'm in quite a bit of pain with my left ovary, so he wants to make sure that there is no cyst on it and we will go from there.

My appointment has been booked for November, but we are moving next month with HM Forces, so we will have to wait and see what happens and where we go.

So that is my story so far.

I have always suffered from heavy painful period and severe fatigue, but I just thought it was part and parcel of periods and the female way of life. I have been given Mefenamic Acid and co-codamol, it takes the edge off but it doesn't stop the pain. I just hope my fatigue and pain can be controlled so that I can be a happy mum for my kids, and I know I am extreemly lucky to have them.

Many Thanks for reading,

Nicci

[squidgy]

Oh bless ya! You really have been through the wars! I hope they manage to find a concoction that works best for you and gives you some relief from it all. You are so strong and brave! Thank you for sharing your story with us. What fab children and husband you have! x hugs of support to you x

[Nicci9904 in reply to squidgy]

Thank you so much for your kind word and support.

Many Thanks

Nicci x

[cjb-75]

Massive Hugs, thank you for sharing, it makes us know we're not alone.

your symptoms, results and treatment sound similar to mine, although I had a laparoscopy not laporotomy, and my ovaries thankfully were ok. But I have had the stabbing pain that has left me crippled on the floor. I once went to the loo, got the stabbing pains and ended up hyperventilating, and my hands cramped up and went numb. My poor husband had to calm me down and wipe my bottom!!! (TMI?! lol). But several times I collapsed on the floor getting my little girl dressed and my husband had to take time off work (he doesn't get paid if he doesn't work) to look after us both. I had a lap in Feb, they only managed to sort out my womb area, not the abdominal area. They're recommending a full pelvic clearance (but we're ttc for 2 years). I've started the endo diet and for me it has made a massive difference combined with the op. I don't have the cramps or stabbing pains any more. I can survive with heat pads and paracetamol, and I have a lot of energy, so I'm confident looking after my 3 year old. I used to be on mefenemic acid and co-codomol too.

Massive massive hugs, I feel your pain and hope you find a solution that works.

Love

Charlotte

[Nicci9904 in reply to cjb-75]

I asked about a change of diet and was told its a 50/50, it was almost as if they couldn't be bothered with me on my 1st consultation after my op. My problem is I don't like salad, and most veg, so I struggle with diets. I've looked on the internet to see if I could find a diet to help with the endo, but not found anything yet.

Ah well, hubby is home soon, so that will be alot of stress lifted off my shoulders, once he's home safe, I can relax, so hopefully the pain will subside, even if it is only slightly.

I can sympathise with the toilet story, my mum was a single parent and suffered with slipped discs, my brother and myself used to have to wipe her and help her when she was bad.

If you know of any sights with diet advice I'd be grateful if you could let me know.

Thanks,

Nicci

[cjb-75]

I've paid a nutritionist, Dian Shepperson Mills, who authored endometriosis a guide to healing through nutrition. Her site is endonetriosis.co.uk.

For me I'm cutting out wheat and cows diary, orange and grapefruit, limiting alcohol, caffeine and sugar and soya, trying to have red and green veg every day having fish 2-3 times a week and taking a ton of suppliments. I did come across a brilliant blog by a fellow sufferer with a ton of advice. When I'm next on the computer I'll try and find it andand post. The diet is about minimizing oestrogenic foods, irritating foods, eating nutrient rich food and boosting immune systems.

I"m 3 months in and the difference is worth the effort of change for me. It doesn't work for everyone... my consultant and gp haven't mentioned it at all as an option.

Love Charlotte

[Nicci9904 in reply to cjb-75]

Thank you my lovely, that would be great, I have thought of juicing and putting the veg into soups, as I love homemade soups.

Thank You

Nicci x

[cjb-75]

Hi Nicci,

I've found the blog it's here josephine-eliza.blogspot.co... Her story is phenomenal and her recipe suggestions are good.

I do lots of home made soups too, great for lunch - salad counts as veg too so a simple lettuce and tomato accompaniment to a wheat free pasta carbonara counts (Not a proper salad just on it's own which I also find a bit dull and boring).

Curried veg is a great option too, Madhir Jaffrey has a great recipe for curried cauliflower with tomato / onion. Also thai green chicken curries you can add loads of veg too, which disguises the flavour of the veg if you don't like them on their own...

Good luck, let us know how you get on if you decide to go for it.

Charlotte xx

[Nicci9904 in reply to cjb-75]

Thank you Charlotte, sorry I've not replied sooner, my husband arrived home from an overseas tour early and surprised us all

I was hoping once he was home the pain would ease, but still in pain

Doctor has changed my medication to strong co-codamol and Naproxen, y

They dull the pain but it doesn't go away.

Thank you for the link, very much appreciated.

Nicci xx