My Story (This is just the start) !!!........

[staceyannkelley]

Hello everyone,

My name is Stacey, I am 31 years old. I have 3 beautiful boys and an amazing husband. I started my periods very early I was 11, and from that day had horrible heavy painful periods. At the age of 14 I was so bad I was taken in for an investigation Laporoscopy. I dont remember very much I was very young but remember waking up on anti biotics and an appointment to attend Gyny clinic 4 weeks later. I attended Gyny clinic 4 weeks later with no explanation and a further ailment of bowel problems which I hadnt had before the operation. I was told to keep in touch with my own GP if pain persisted.

Weeks, months and years passed, pains still horrible, but now the bleeding on periods had become very heavy, headaches and tiredness set in making it virtually impossible to stay in college. I left and continued to hassle my GP about my illnesses and pain. I was always given different tablets which I admit I didnt take as I am not really a tablet taker. I have my paracetamol and that is all.

At the age of 21 I had had enough, I asked to be referred to a specialist which I managed to get. By this time I had already had the pill, the implant to stop periods, and counsellings.

The time came to see my Gyny specialist I was so pleased that I thought finally something will be done. My mum came with me for support. I spent 1 hour explaining the pain and tiredness and headaches the heavy bleeding the bowel problems and he said my only option was to stop the periods and that I had to have the coil. I questioned him (MALE) because I wanted some investigations, but he told me that I simply needed to try the coil. I cried in the surgery as I just knew in my heart that this wasnt the end. I sat in the waiting room after the consultation when i was approached by his nurse who comforted me and said to my mum that he refused to do anything on young women and that he didnt think I was serious. I went ahead and had the coil fitted, by this time I was working. I had to leave work due to severe bleeding and pain. The coil didnt seem to do anything, it didnt make it worse and he didnt make it better.

Days - weeks I spent in bed, 3 weeks out of 4 I would be in pain. I would bleed, I would be lifeless. It was a nightmare. I attended my Gp surgery nearly every week for 1 whole year. They would check my blood count tell me I was anemic and give me iron.

2007 I was 27 years old and I took a turn for the worse. I couldnt get out of bed, I felt like id lost my mind. I could barely lift my hand to wash. I was in so much pain, I would be physically sick. The bleeding would just pour out of me. I honest felt I was dying. I could no longer look after my 3 boys and was bed ridden. I had doctors telling me I was depressed and that I needed reviewing by mental doctors. I saw mental doctors who said I had Bi Polar Disorder, This was then revoked 3 months later when I was reviewed again and told I had no mental health problems and that I was in extreme pain, causing anxiety and so forth. This went on for 12 months. I eventually dragged myself to the doctors for what seemed the millionth time along with my husband and mum for support. As I sat pouring my heart out I got yet ANOTHER diagnosis. So now in 2009 I am diagnosed with M.E myalgic encephalomyelitis i WAS DEVASTATED. But until I started to research this found that I started to think I had been misdiagnosed once again. I was put on a waiting list to see a specialist for M.E who then diagnosed me with thyroid disorder. I was so fed up by this point. I felt like giving up! My life had all but gone

I carried on and was told after blood test that i didnt have thyroid disorder. I wanted to know why nobody investigated my symptoms properly. I wanted scans and such. I attended the GP again in 2010 jan I saw a new GP a young lady who took me very seriously. She said I needed a second opinion on my pain and bleeding and that I had got severe. She told me that she had worked for the previous Gyny specialist and that he was not operating in on young women. This was the second time Id been told this. She arranged for me to travel across town to a different hospital to see a gyny specialist.

2010 march I was seeing a very old foreign gyny who for the first time sent me for an internal scan where I was never given the results. I was told by him that I should have the womb oblation and told to go away and think about it. I went away and spoken to lots of women that has this done. I just knew in my own mind that it was not going to work for me. I discussed this with him and he said that I had only 1 option left and that was to explore and see exactly what was going on. I was delighted. FINALLY.

24 June 2011 9am I await my surgery hoping to finally get answers, finally have something done for me. Finally get my life back and be able to look after my boys. I was told that my sergery would last 1 hour max and so mum and husband awaited me.

6 and a half hours passed when I was wheeled down from surgery.

I'd had a full abdominal hysterectomy and that age of 30. i was devastated.

My Gyny Surgeon apologized to me the day after surgery. He told me that I was a medical emergency and that what he had found was a hemorrhaging Ovary, Cysts on my ovarys and the worse case of Endometriosis he had come across all over my abdomen, bowel, and possibly elsewhere. He said he never in a million years expected to find what he found inside of me.

I HAD NEVER KNOWN WHAT ENDOMETRIOSIS WAS UNTIL AFTER THE SERGERY

I am nearly 12 months after surgery and still in pain. I have a team of specialists which I am under and was told yesterday that I was left that long that I will forever have the pain and symptoms. I was devastated to say the least. I have 1 ovary left inside my body with no tubes attached as I had 1 ovary which was cleaned up and left. Of course this is helping the endo to come back. I am due a CT scan in the next month to see exactly where else I have it. I am just so angry and upset that I had to go through so much to get this done and all along all my symptoms were ENDOMETRIOSIS>

I know iv not mentioned everything here but I could go on forever this illness is so much more than just pain!

I want to help in anyway I can to improve awareness and help others. As I sat in a Manchester Hospital Clinic 2 Weeks ago my nurse told me that soooo many women are going through this I just know I have to help do something.

Feel free to comment and ask any questions if you like. I hope to help if I can. I am seeking advice at the moment locally to raise awareness and my NEW Doctor is helping me. Thankyou for taking the time to read this.

[ginger83]

I really feel for you. I have been suffering from endometriosis for the past 10yrs. I was initially diagnosed with IBS and only found out I had endometriosis during a laparoscopy for suspected appendicitis. I didn't actually have appendicitis, I had an ovarian cyst which had ruptured and endometriosis. I am booked in for my 3rd laparoscopy after which I will be given GnRH for 6mths then possibly a hysterectomy. Is there any chance of your remaining ovary being removed? Would you want it to be? I'm asking as I know that your ovaries stimulate endometriosis. If I'm offered a hysterectomy, I would like a full one. I'm almost 29 and have 2 children.I hope you are now given the help and support you need.

[worth71]

i feel for you too - i think it is so bad that in this day and age and in this country we are fighting for this to be heard, but instead we are treated like we are going insane, or just putting on the pain for attention - well we are not stupid, and i think as women we know our own bodies, and we know when something isn't right - sometimes the pain is far worse than giving birth, maybe its because when giving birth there is a purpose, all this pain has no purpose - until i had major symptoms of this i did not really know anything about this condition and it makes me want to get it out there make people really aware of it and how it can debilitate a womans life - i think if they did scans and laps sooner then we wouldn't be left for so long trying this, that and the other.

i really hope you get some sort of relief soon xxx

[figgy]

Hi, i too know exactly how you feel. At the age of 14 i was told my pain and misery was all about being a woman and it was quite normal. I have a sister 3years older and she never suffered in the same way so i knew that what i was being told was wrong. I have lost count the number of times i was prescribed ponstan, which did nothing to assist me and as for the pill i must have been through the entire alphabet of them all to no avail. I am not as lucky as you and dont have children, i was diagnosed with endometriosis when i was in my 30's and after untold amounts of surgery i finally had a total hysterectomy at 44, more surgery the following year to remove more endo and 4 months on i can finally say feel i am in control of my life and not this terrible disease. A desease that has robbed my of so much.

Much more is know about endometriosis today than it was when i was young and your misdiagnosis makes you think how many other ladies out there have been slapped with an incorrect label through ignorance of this disease. I Agree it is vital there is greater awareness.

Good luck with the next stage of you road to recovery. Unfortunately it isn't going to be all smooth sailing and surgically induced menapause is another ball game but you have got this far and i am sure you will you will make it.

Keep smiling x

[Imarevel]

Hi my periods started heavily at age 11. I started getting bad pain not long after but was only ever looked after by stomach doctors, no gyna.

Eventually I did see a gyna after bleeding every day for 2 years. He said that there was nothing wrong with me and discharged me.

Since then after 10 years of suffering and being wrongly diagnosed with IBS and chronic pain I got my Endo diagnosis. I've now had 6 laps and am looking at more in the future.

I'm only 23 so I feel my Endo journey still has a long way to go but I'm now very lucky to have to great gynacologists and a brilliant GP.

I haven't worked in 2 years due to Endo and I'm on morphine patches but I really hope to come off them soon as I've started having zoladex injections which have helped ease the pain but unfortunately done nothing for my extreme tiredness.

But jm very lucky as I've had great support from Endo uk and the support they've given me is invaluable. I urge you to become a member to help them continue there support and help get more info from them.

I have been very lucky and my church has offered me a job in their new cafe which I cannot wait to start but I'm so nervous that my Endo is going to stop my living my life again. But I'm going to give it my best shot. I won't let this horrible disease win

[staceyannkelley]

How amazing that I got reply from women who really truly understand exactly what it can be like trying to live with this horrendous disease. I thank you all for taking the time to reply and I too wish you all the very best of luck in the future with your journeys. I shall keep ppl updated with my progress and help in anyway I can.

And to answer the lady at the top yes if I had a choice I would of had both removed

[jess1478]

I fully understand where you are coming from.

I came off the pill 2 years ago in the hope to try for a baby, things went terribly wrong straight away, i can rebember it starting with ovary pain during ovulation, that was so bad i could barely move. Then the periods got really bad, i was sweating, being sick and suffering badly with bowel pain. After 3 A+E admissions for pain relief whilst on periods i eventually got a surgeon who did a Lap in Feb 2012 and said that i had very severe stage 4 endo, he couldnt even see anything, could not make out where my ovaries or tubes were. Its grown all over my bladder, urterus, tubes and ovaries and bowel. He said it had gone under my ribs and onto my stomach. He said that in his 20 years of experience he has never seen anything so bad. So that explains the PAIN i was in all those months. Since that Lap i have been bleeding everyday.

As i dont have any children and am 25 the surgeon managed to free up one ovary ready for me to try IVF. Ive had a massive fight with the NHS to get some funding. I go in about 2 weeks to start the process, but i still have a 5cm cyst on my ovary so thinking that they will turn me away for the full operation before going ahead. which in effect may not work due to the surgery damaging things,

The one thing im quite bothered about is that i will be having some of my bowel cut away and will need a temporary colostomy bag. Not great.

Trying to stay positive is so hard when pain is taking over my life.

I hope you end up pain free, you'd think a hysterectomy would sort it out. Its those damn ovaries that are the problem!

[HeatherSwiegers]

staceyannkelley

Can anyone give advice Pelvic Organ prolapse, endometriosis and fibromyalgia?

I have had many laparoscopy surgeries; I have also been on the depo injection for 13 years.

I tried for 4 year to fall pregnant. I moved to the UK and saw a great gynaecologist put me on clomed, blood test and husband had to give a sample. He had 9 swimming that was 3 more than in South Africa. We were all set to check my uterus and tubes. (Previously I had been told me tubes were blocked), then we were set for IVF.

I fell pregnant. That was 5 years ago.3 years ago i had advised that i wanted to have another baby. Came off Depo and my period only stated this year until end Jan this year.

My doctor spoke to a gynaecologist and got advice to put me on Clomed. She was very concerned about the pain I was having. She split her knee cap and I did not see her until May.

I have had such back pain and bloating that some days i get to work and just can't function, come home and straight to bed.

I cannot get any higher pain killers as I am already on tramadol. The amitriptyline cancels most of the tramadol out. Co-codeine sometimes helps.

I had phoned up the NHS help line in April very concerned. I had got out the shower and felt burning in side my vagina. When I sat on the toilet and felt in side, I was touching what felt like a penis coming towards my opening.

I spoke to the NHS direct, they told me to take a paracetamol and they would call me back. I phoned up again two hours later; I explained that I am already on tramadol. They assured me that someone would phone.

Monday morning I phoned my GP and asked to see the duty doctor. The doctor examined me and asked how many children I have given birth to naturally; I said one by C section. She said that he uterus was very low. She also said that there were very thin walls in places and other places had additional tissue. She said that if it popped out to lie on my back with my feet in the air and push it back, if I did not feel right about that, then I was to call the surgery and they would push it pack.

I explained that I always had pain when having sex and the swelling afterwards was very painful. She said because I was on clomed that I should use a turkey baster if I could not have sex.

She also said that there is a test they can do to see how far my uterus comes out. I lies on my side they grab hold of my uterus and see how far out they can pull it.

I was horrified.

My husband went with to see this GP who agreed to refer me to a gynaecologist.

So now I wait.

I have tried to explain to the doctors the pain i am in, almost every day, never mind how much I have during sex. I have a uterus that is full of bubbles (scar tissue), I wet myself some times and other times I have to push the urine out. (I do not want to list all my issues here so this is the short version)I have sat and cried in the GP's office. My Fibromyalgia is just another world of pain.My other GP is now back and says that she attended a conference that said that most woman have a low uterus. I asked is this when they have had a vaginal birth. She says yes. Only one problem I had a C- section.

I was worried that i have been making a mountain out of a mole hill. I asked my doctor if it was normal to be able to put my finger into my uterus and she said ' it depends on what time of the month it is'

The pain clinic wants me to focus on doing less and taking less meds…..

I am also told to be positive…

I work 5 to 6 days a week in a very stressful job, 40 to 50 hours a week and still function at home. I asked then I am positive to be able to be a mom, wife and manager but sometimes positive is not enough.

I am not quite sure what to do any more...

I have started using lidocaine patches for my back, but the doctor has taken me off the Tramadol. I understand this and he is sympothetic towards the Fibro but none are treating the endo. I have done some research and are going to ask about Fentanyl.

I will mention that when my doctor noticed that 90 patches a month of Lidocaine costs £240, he did not sound impressed.

I am an appointment this month 30 with a specialist that is really good.

I will also help in any way possible to promote awareness

[lm330]

Hi Staceyann,

I can see that this is an older post, but it came up under my search, and I just had to reply. I cried reading your story. I really thought I had it bad waiting 8 years for a diagnosis, and all the while in agony, but my heart really goes out to you. I had the same problem (ironically also in Manchester) with no one taking me seriously. i was literally in a & e every week crying my eyes out in pain and hardly leaving the house for years due to pain and exhaustion. drugged up to the eye balls on everything under the sun they could think to prescribe for pain etc which only made things worse. I just dont understand how doctors can think there is nothing wrong in this situation. I only got diagnosed when I moved to another city, and my new GP immediately referred me to a gynecologist who then recommended me to have a lap to look for endo. It does seem so much down to the individual GP or gynae, which is really worrying. Im still struggling with the aftermath of endo too, but your story really inspires me that you still keep going after all you have been through and that you are a mum and a wife.

i hope that things have improved for you, and that you are managing to get your life back on track. thank you for sharing your story, hopefully this is the beginning of a new chapter for you xxx

[staceyannkelley]

Hello IM330

How lovely to log in to such a wonderful message! I feel that after reading so many Blogs on here it shows that the amount of women that are suffering is huge! Its extremely sad.

I am currently undergoing massive amounts of tests finally and will be starting Prostap to cut off my last remaining ovary and HRT. I am very nervous and have been advised that I will be taking it for at least 3 yrs with a view to more surgery.

I wish each and every one of you all the luck in the world.

Much Love