Tales of Survival


If you'd like to share your story, please email me.  If you have a web page dedicated to your experience with endo, please include it.  I'd love to visit you!
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Stacee's Story

Hello.  I am an endometriosis survivor.  My name is Stacee and I am 21 years old.  Unfortunately, my fight is not over.  Due to the laparascopy where they discovered the endometriosis (finally, I have been suffering since the 7th grade) and lasered it out, I developed a severe blood clot that runs from my stomach to the bottom of my left leg (deep vein thrombosis).  While I was in the hospital, an embolism occurred and they had to place an IVC filter in my vein.  I would love to hear more from survivors and hope to understand what has happened to me.  I am a biochemistry major at the University of TN and as part of my senior research, due to the illness, I will be researching my own situation. If you have any information that you would like to share, I would greatly appreciate it.
Sincerely,
Stacee
rayslynn@utk.edu

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Traci's Story
ogl@icon.co.za

Having felt so awful for far too long, I visited my GP to ask what she
thought might be my problem. I explained that I had constant aches and
pains, heavy duty fatigue, painful sex and hellish problems going to the
loo. I really was finding it difficult to cope with daily life. The 'lump'
was what I was most concerned about as I felt as if there was some sort of
obstruction in my rear end. It wasn't that I didn't feel the need to
'go'...but that there seemed to be a blockage down there. I had reached my
breaking point and I needed help...I felt that I was not able to be a fit
and fun mother, a good wife, or even a happy woman anymore.

My lovely doctor examined me thoroughly and agreed that she could feel a
lump in my rectum. I was referred to a gynaecologist to check it out.

The gynaecologist scanned me, said that my prolapsed uterus was the cause of
all my pain and discomfort and that having a hysterectomy would be the only
way to get rid of all my symptoms. By having babies vaginally it was very
typical that I had this condition. He also said there was absolutely nothing
wrong with my rectum/bowels and that what I was feeling was just pressure
from my prolapsed uterus. I have three beautiful children (7,5 and 2 1/2)
and had been thinking about a fourth, so I questioned whether I could still
get pregnant. The gynaecologist told me that, when pregnant, the womb just
pops back to where it is meant to be. As the gynaecologist stressed the fact
that without the surgery I would continue to feel awful and probably more so
, I  decided that I couldn't cope any longer with all my exhaustion and pain
and that I would, sadly, have to forget about a 4th pregnancy...I just
wanted to feel okay again. He assured me that this would give me a new lease
of life.

So, I had my womb removed. And I waited until my 6 week post-op check up.
And I told the gynaecologist that I STILL felt terrible...and I STILL could
not go to the loo...and could he PLEASE check to see that there wasn't a
lump there. 

He checked with ultrasound...though I felt he wasn't really bothering to
look to clearly. He checked with his finger inside me...though not far
enough up. Then he told me that I was being very silly, didn't I realize
that it took about 3 months to fully recover from surgery, and of course my
body would take time to heal fully. He got cross with me about not trusting
him, and said that if I wasn't happy with him I should seek a second
opinion.

So I did.

I left his office and went straight to my GP. I asked her to see if she
could still feel the lump. She could!

I was then referred to a surgeon, who could also feel it. The following week
I had a scope and biopsies.....these showed endometriosis.

My surgeon has now referred me to a top gynaecologist who will hopefully
shed some light on my dilemma. Did I have my 'baby carriage' removed
unnecessarily? My GP and my surgeon think that perhaps I did. Well, I cant
get it back now. I'm sad. And very angry.

But until I have all the facts, I will keep quiet. I cannot stop thinking
about this man who removed my uterus, without checking other options first.
What if he does that to a younger woman who has had no babies yet? What if
he has already done the same to lots of others like me? Doesn't he realize
the effect such a thing has on a woman (and her loved ones). We feel total
outrage. I was able to deal with the op and the end of my reproductive years
because I felt that it was the only way to start feeling well again. Here I
am, still feeling like I am 90 years old ( I am 33) and wondering what on
earth I should be feeling now?

I wonder how many other women out there have been through the same sort of
madness?

Well, whatever treatment I need, I know that I WILL be fine. I have picked
up so much useful , interesting, helpful, supportive information on these
pages. I am filled with a sense of calm, in the knowledge that there are so
many other women suffering the same pains and the same worries that I have
experienced.

All I want to say to everyone of you is "Hang in there...and one day you
will feel fine again". That's what I tell myself every single day...and I
truly believe it. And to say I look forward to that day is an understatement
of huge proportions!!!!
 

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Charlotte's Story
insomniacs41@btinternet.com

My name is Charlotte; I am 27 & was diagnosed with Endometriosis on 14 September 2000.  

I started my periods when I was 12 and they have always been heavy & painful.  Not long after I met my now husband when I was 16 I started using the contraceptive pill and continued until I was 22.  Even whilst on the pill periods were painful, but more bearable.  After I couple of normal periods I started to use Depo Provera. It felt great to have no periods, although I did put on weight, I felt normal.  I think my mother was concerned that my periods had stopped; she didnít think it was natural.  I continued will Depo Provera injections for a while when I heard about Persona.  It seemed a good idea although I knew I had to wait for my periods to return.  I think that 18 months without periods had blinded me to how bad things were when I was having periods.  12 months after my last injection my periods started again. I rushed down to Boots to get my first Persona kit.  It sounded great and in July 1997 I started to use it.  My periods werenít too painful at first, but things began to get worse.  

It wasnít until I went for a regular smear test in January 2000 that I realised I might have problems.  The nurse at my GPís practice asked me if I had any further problems.  I said I had painful periods and she told me about the coil and how well it worked for her.  She suggested that I should make an appointment with a specific doctor in the practice Iíd never seen before.
One week later had an appointment with that GP.  She was sympathetic, but advised that the coil wasnít suitable for me as I had never had a baby or even been pregnant.  She suggested I try tranexamic acid for 3 months, which is good for painful periods.  I explained my symptoms: bad pain a week before my period, large clots, back pain, pain in the legs, severe cramps it continued all through my period and I had pain for a few days afterwards in my pelvis.  She asked me if Iíd heard of endometriosis.  I said I had but wasnít sure exactly what it was.  I went home and started the drugs straight away hoping that would be the end of that.  It was the worst month Iíd had until then, one night I was crying in agonising pain and couldnít move for 4 hours, I felt horrendous.  I decided to go back to see my GP 2 weeks later.  She examined me internally and found a Polyp in my cervix, she said I could have more in my womb, but she seemed to think my problems were caused by Endometriosis.  She gave me Mefanamic Acid to try and said she was referring me to a Gynaecologist at my local hospital.

My appointment arrived in the post a few weeks later, it was arranged for Friday 24 March 2000.  My husband and I went and I was internally examined, but the doctor decided not to remove my polyp at that time, as I was clearly in agony. Again I explained my symptoms and by then they had worsened.  By then sex was painful, and going to the toilet was painful.  I was completely debilitated by then for nearly 3 weeks every month.  They advised me to take the pill continuously without breaks and go back to see them on July 24 2000.  My GP prescribed them for me.  The pain wasnít as bad at first instead of being debilitated the pain was always there but nowhere near as bad.  I was still using mefanamic acid for a while.  I started to deteriate, the pain became more agonising my doctor prescribed DHC Continous 90mg, but it didnít help much. 

By the beginning of May I went back to see my GP again.  When I walked in to the consulting room I just cried solidly for 10 minutes, I didnít know where to start.  I explained how things were, that when the pain got so bad I just wanted to die.  I told her of the time when I thought a bath might relax me a bit, so I could cope with the pain.  I was stuck in the bath for 2hrs 15 mins, paralysed with pain, unable to move, crying and shaking in the cold water, unable to reach the hot tap before my husband helped me out (he thought Iíd had a bath and got back into bed) She asked me how I felt about anti-depressants.  I wasnít happy about it but she said there was a non-addictive sort that was designed for people in constant long-term pain and theyíd also numb my pain receptors.  She was convinced by now I had Endo and she wasnít prepared for me to carry on until July.  She arranged an appointment with my specialist for the following week. 

I went back and they arranged an appointment for a laporoscopy for October 26 2000.  It seemed a long time to wait but at least I wasnít on a waiting list.  Despite taking Amitriptyline, DHC Continous, the pill continuously and mefanamic acid every day at maximum dosages, I was still suffering everyday.  Iíd already discussed the possibility of a hysterectomy with my GP.  She said it was a possibility, as I donít want kids.  My 3 brothers all have children and my mum has come to terms with the fact I definitely donít want kids ever.  Even she discussed hysterectomy with me and she thinks itís a good idea.  I understand there is a big difference between not wanting kids and not being able to have them.  But anyone who knows me well knows Iíll never want kids.

I wrote to my GP on 21 August to explain how things had got much worse, and I didnít feel I could carry on.  Within 4 days I had a response from her saying she had written to my specialist to try and bring my Lap forwards and if I wanted stronger painkillers to go and see her.  However, I hated taking the pills I was on especially as I still felt so crap 24hrs a day everyday.

Within a couple of days I had a letter from the hospital due to my circumstances it had been brought forward to 14 September 2000, and I also needed to attend on 6 September for routine pre-op tests.  I received a further letter from my GP a couple of days later asking me to go and see her whenever I felt before or after my op.  

My lap took place, despite the fuel crisis (a meeting was held the day before my op to see whether all non-urgent ops should be cancelled). There were constant news bulletins on TV they day before advising the NHS was on red alert.  I rang the hospital only to be advised that as long as I didnít need an ambulance my Lap would go ahead the following day.  

My lap went ahead and I was diagnosed as having Endo as expected.  Since last Monday I have been taking Provera 3 x 10mg per day and Iím now taking the pill normally.  I donít feel any better so I havenít been back to work yet, I may go back Monday part time.  Today Iíve had bad stomach pains and an every to empty my bowels urgently 3 times.  Itís probably the drugs; Iíll be on them for 3 months then 1 month off, back to the specialist in 4 months time.  Iíve already decided I want a hysterectomy ASAP.  I canít bear the thought of years of surgery and tablets like most of you have had.  Iím determined Iím not going to be a guinea pig.  I know thereís no cure but a total hysterectomy including ovaries give Endo only 0.01% chance of coming back.  Iím not ignorant, I have read multiple websites and I understand the drugs only work for as long as you take them!  I only see them as a way to recuperate from my Lap before I ask the consultant for a hysterectomy.  Roll on January 2001 when I go back to ask for this hysterectomy!

I am only writing this story as all your stories have helped me and maybe mine can help someone too.  You know, I have a friend with Endo; she is 20, engaged and wants kids in a few years.  She under the same consultant as me but it was 2 years before her GP referred her to him though.  Two weeks ago the consultant told her she only has 2 years to have children.  After that as her ovaries have been affected she will probably become infertile.  This makes me feel guilty, as it may be too late for her.  I know you have to fight and be persistent to get the NHS to act as quickly as mine have.  Even though sometimes all you want to do is curl up and die!!!
 

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