17/9/2000

I was diagnosed with Endometriosis on 14 September 2000 and I am 28 years old.

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 injection contraceptive. It was great to having no periods, I felt normal, no more black outs or pain.  I think my mother was concerned that my periods had stopped; she didn’t think it was natural.  I continued with these injections for a while until 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 them.  Twelve 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 weren’t too painful at first, but things began to get worse. 

It wasn’t until I went for a regular smear test in January 2000 that I realised I might have problems.  The nurse at my GP’s practice asked me if I had any further concerns.  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 that I’d never seen before.

One week later had an appointment with that particular GP.  She was sympathetic, but advised that the coil wasn’t 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, awful back pain, pain in the legs, severe cramps and it continued all through my period and I had pain for a few days afterwards in my pelvis.  She asked me if I’d heard of endometriosis, I said I had but wasn’t sure exactly what it was.  I went home and started the drugs straight away hoping that would be the end of that.  Within a week I suffered the worst pain I had ever experienced.  One night I was crying in agonising pain and couldn’t move for 4 hours my husband wanted to take me to casualty, I felt horrendous.  I decided to go back to see my GP 2 weeks after my initial consultation with her.  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 Gynecologist at my local hospital.

My appointment arrived in the post a few weeks later, it was arranged for Friday 24 March 2000, 3 days before my birthday.  My husband and I attended 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 very painful, and so was going to the toilet.  I was completely debilitated for almost 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 the Cilest contraceptive for me.  The pain wasn’t 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 Continuous 90mg, but it didn’t help much.

By the beginning of May 2000, I went back to see my GP again.  When I walked in to the consulting room I just cried solidly for 10 minutes, I didn’t 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 lifted me out (he thought I’d had a bath and got back into bed) She asked me how I felt about anti-depressants.  I wasn’t happy about it but she said there was a non-addictive sort called Amiltryptiline to boost my seratonin levels that were designed for people in constant long-term pain and they’d also numb my pain receptors.  She was convinced by now I had Endo and she wasn’t 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 laparoscopy  for October 26 2000.  It seemed a long time to wait but at least I wasn’t on a waiting list.  Despite taking Amiltriptyline, DHC Continous, the pill continuously and mefanamic acid every day at maximum dosages, I was still suffering everyday.  I’d already discussed having a hysterectomy with my GP.  She said it was a possibility, as I don’t want kids.  My 3 brothers all have children and my mum has come to terms with the fact I definitely don’t want kids ever.  Even she discussed hysterectomy with me and she thinks it’s 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 I’ll never want kids.

I wrote to my GP on 21 August to explain how things had got much worse, and I didn’t 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 Laparoscopy forward 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 dreadful 24hrs a day everyday.

Within a couple of days I had a letter from the hospital and 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 the day before advising the NHS was on red alert.  I rang the hospital only to be advised that as long as I didn’t need an ambulance my Lap would go ahead the following day. 

My lap went ahead as planned and I was diagnosed as having Endo as expected.  I was immediately prescribed Provera 3 x 10mg per day (progesterone) and continued with the pill normally. I’ll be on them for 3 months then 1 month off, and then back to the specialist in 4 months time.  I’ve already decided I want a hysterectomy ASAP.  I can’t bear the thought of years of surgery and tablets like most sufferers have had.  I’m determined I’m not going to be a guinea pig.  I know there’s no cure but a total hysterectomy including ovaries give Endo only 5% chance of returning usually in the bowels but possibly in the lungs or another part of the body.  I’m not ignorant, I have read multiple websites and I understand that 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!  

Work have been brilliant my manager has told me to take off as much time as I need, she doesn't know how I cope.  I'm not sure I do, I've ended up in tears a couple of times, it's difficult to keep it together when you're in constant pain 24/7.  I just crawl round the office in a daze just trying to get through the day.

I have a friend with Endo; she is 20, engaged and wants kids in a few years.  She's under the same consultant as me but it was 2 years before her GP referred her to him compared with my two weeks.  Two weeks ago the consultant told her she only has 2 years to have children.  After that her ovaries will have become  affected so badly, she will 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!!!

UPDATE 13/12/00

As I previously told you I started Provera tablets.  They didn’t help at all!  After the 1^st month I had to go back to my GP to see if she could prescribe stronger painkillers. My husband accompanied me on that occasion.  I just broke down in tears I didn’t know where to start; my husband explained how things had worsened.  I could hardly speak; I muttered the odd comment through the tears.  I told her I couldn’t cope any more and when she asked what I meant I said, “ I want to kill myself”.  She said I should double my Amiltryptline tablets to 100mg per day. She prescribed Paracetamol/Codeine tablets (500mg Paracetamol and 30mg Codeine – over the counter only have 8mg Codeine) in place of the DHC tablets and took me off the pill (in case the small amount of oestrogen was inflaming my Endo) and told arrange a consultation for a month later as she wanted to check on my progress. I managed to get my self together before I walked out despondent.

Same old story, it didn’t help one bit.  In fact I was worse, it go to the point where just going to the toilet was so painful.  I’d get horrendous pain, which completely took my breath away, and I couldn’t move, in every other respect agonising pain 24hrs a day.

A month went by so I went back to my GP and told her how things were. She said the Provera was obviously having no affect on my endo and was worried it could spread from my pelvis to my bowels.  She asked how I felt about taking Danazol it may help but it had some bad side affects. When she said irreversible deepened voice, body hair and liver damage (I’d never heard that about the chance of  liver damage before) I said no way.  She replied there was only GnRH left (i.e. prostrap, goserelin) I asked about better pain relief and she advised I was on the strongest painkillers she could prescribe and that she couldn’t help me any more.  She gave me a prescription for Zoladex goserelin injection and told me to make an appointment so she could administer it.  I had my first injection 2 days later.

The first week was no different, the second considerably worse, the Vodka & Painkillers came out a couple of times that week.. Bingo! week three was a revelation; no pain and I had so much energy I felt I could run a marathon.  Week four (last week) I had a little pain and a dreadful stomach upset which my GP put down to a virus.

I am still suffering pain but apparently that’s the pain coming out.  I had my second injection last night and started taking HRT as well due to the annoying hot flushes and night sweats (god how I have tossed and turned in the early hours) My GP says this month will be better.  I’ve discussed hysterectomy with her I feel it’s my only hope, she says there is an approximate 5% chance of the Endo coming back..  I’m not prepared to have laser treatment for just a few months of relief (she was completely honest with me and said the pain will come back, I might get 18 months relief or just a couple).

I just have to hope my consultant is sympathetic to my needs and agrees to give me a hysterectomy!  I won’t know until I go back on 26/1/01.

I hope these injections will give me a few months living a normal pain-free life.

UPDATE 9/1/2001

I feel so brilliant, these Zoladex injections really work absolutely no pain, I feel normal.  I don’t know how I feel emotionally, I know that within 4 months I could be back to square one, back to the constant pain with no effective pain relief.  I have my third injection tomorrow so I’m now half way through this course of treatment.  I can’t help feeling sad, what will become of me next?  I’m so confused as I am so enjoying being ‘me’ again that I can’t bear the thought that I may never feel like this again and this is something that I have to be realistic about.  My fears taint my current happiness at times even though I am trying to enjoy just being normal.  Why me? Why do I have this incurable disease? I've been told that only morphine can get rid of the pain now.  Another of my friends with Endo has to have a pethadine injection every week at the hospital, but it only gives her relief for 2 or 3 days.

My next appointment with my consultant is just a matter of days away and I am determined that I will not walk out of the hospital without him agreeing to carry out a full hysterectomy.  I want every single female organ taken away a complete surgical menopause.  I had to stop taking HRT  after one week due to side effects.  I feel I have waited so long for this appointment (since 14/9/00) that it seems one of the longest periods of my life.

I’m so scared of the future, I don’t know if I can continue, cancer would have been preferable to this disease, at least I would have had a chance.  I wish I could buy a cure to save the all the women this horrendous disease affects.  I wish someone could save me because I am experiencing great difficulty trying to carry on, I really want to survive for the all of the people that I love.  Although when I think about the times when I’ve sat and just wanted to die, I mean really do it and seriously kill myself, and I’ve sat on my lounge floor with a bottle of Vodka and my numerous bottles of useless painkillers whilst I've cried and screamed in pain, I think can I really get through this?

UPDATE 10/1/2001

God that injection hurt so much today!  Following a conversation with my GP I am now even more confused.  She advised that the pain may or may not come back (but it usually does).  Therefore, no decision can yet be made about future treatments as it's a question of wait and see. I'm sick of this continuous waiting, wait for appointments, wait for results.  In the mean time life just goes on and on and on and I can't commit myself to anything as I never know how I will feel.  I'd really like to book a holiday somewhere hot but how do I know that if I do I'll be well enough, what if I book it and then the powers that be decide that they want to operate again? I need to take control again but my life seems governed by the medical profession. Do I appear pessimistic?  I don't think I am I'm just aiming to remain realistic and take each day as it comes.  Endo gets in the way, as I seem unable to make long term plans. At the moment I'm pain-free and it is fantastic and I'm trying to live life full on and that's probably a good place to finish this update.  

UPDATE 13/1/2001

UPDATE 17/1/2001

Unfortunately, it wasn't a one off.  The pain is back and it's getting worse each day, I wish I was dead!  My doctor rang me last night and recommended having the injections more frequently than every 28 days, but advised that the only painkillers I should be using are over the counter paracetamol or ibuprofen.  Needless to say they aren't helping one bit.  So, the injections will now be administered about every 22 days, the next one now due in two weeks.  I've got approximately 80 days left before I finish this course of treatment (ha!) what next?  When I started these Zoladex injections I had a little hope.  My doctor is apparently treating 4 other women with this drug and their Endo was helped enormously for a few months.  So why has my pain come back half way through the treatment.?  I ought to perhaps tell you at this point that you can only have 6 injections maximum and never again in your lifetime.  Due to the damage they can do to your bone density, particularly the spine i.e. Osteoporosis.

If I was an animal they wouldn't let me suffer in such agony, that would be considered cruel!

UPDATE 23/1/2001

I can't believe the pain is getting worse, but it is!  Last night was unbelievable, I just cried for hours with the pain.  The pain is stopping me sleeping I've had about 8-10 hours since Friday night (it's now Tuesday) I am so tired and the pain is getting me down. I feel so cheated, I've had a taste of 'normality' (5 weeks) and I really was not expecting the pain to come back, it's such a shock! I've had enough.  There is just one good bit of news - I am actually seeing my own consultant on Friday!  The last few times I've been to hospital he's not been there and I've just seen his registrar and on one occasion in May 2000, a locum G.P. who knew less about endo than I do.  He actually said he didn't possibly think it was endo because I am having pain when I am not having periods (see the page on 'What we know about Endo'). I have definitely decided not to leave until he agrees to a hysterectomy - god I hope that will work..  I don't know how much more can take before I reach breaking point!

UPDATE 28/1/2001

I've been unable to update until now as I feel I have been in shock. When I went to see my consultant one of the first things he said was "You have been diagnosed with severe endometriosis".  News to me, I thought I had just a little at the back of the womb, but apparently it is completely covering both ovaries as well as the ligaments which hold the womb in it's natural position.  He was unhappy that no one had sat me down and explained the full details of my endo and was shocked that the Zoladex injections are no longer working, he is determined to get me pain relief.  He asked if I want children and I said no and therefore he advised he would not subject me to needless laser surgery (which was one of my major fears) as this is only really used to improve fertility chances and that the endo would come back..  He feels a surgical menopause is the answer (he answered my prayers) but wants me to continue with the final three Zoladex injections and he see me again on the 27 April 2001 in three months time.  Meanwhile, he is writing to my doctor to arrange some serious pain relief.  He feels that it would be futile to do the injections closer together and wants me to carry on with them every 28 days, the 4th one being due on 7 February 2001.  I am seeing my doctor on Tuesday 30 January 2001 to get this new 'pain relief', I only hope it is effective.

UPDATE 9/2/2001

I've not updated until today as my visit to the doctors on 30 January 2001 was a complete waste of time.  I rang the surgery prior to arriving to see if they had received my consultant's letter. They hadn't but had spoken to the consultant's secretary who had given details of what I needed.  Only when I arrived my doctor didn't have any details, so it was a complete waste of my time.  She advised me to wait until today (I've been for my 4th injection today) and she should have received my consultants letter.

The letter had arrived when I went today, and it looks like the next and hopefully final step will be a hysterectomy.  I feel totally confused and so alone.  I feel happy and sad, I feel scared, I'm worried how long I'll have to wait. I know it's my only chance of living a normal life but it's such a big step.  Every single female organ will be removed and it will cause a drastic immediate surgical menopause. I'll be on Hormone Replacement Therapy for the rest of my life what if the oestrogen brings the endo back?  How am I going to feel afterwards? How am I going to cope? My doctor says I'll need 2 to 4 months off work.  Will I lose my position at work, will they replace me?

Enough of that I'll end up getting seriously wound up!  By the way, I've got some new pain relief called Tramadol which I started taking tonight lets just hope it works!

UPDATE 6/4/2001

I know it's been a while since my last update but until now nothing has changed significantly until now.  My new painkiller Tramadol helps slightly, but I am still in quite severe pain, it also makes me feel dreadfully sick for hours at a time.  The nausea is helped by taking anti-sickness tablets.  I had my 6th and final Zoladex injection on Thursday 5 April, so there is no further treatment my doctor can give me! My GP thinks that the next and hopefully final treatment is Surgical menopause i.e.: a full hysterectomy.  This should be arranged at my next visit with my consultant which is on Friday 27 April.  Apparently, I should not have to wait longer than 2 or 3 months for my hysterectomy.  I am so scared but I have no choice, I have no life at present just continuous severe pain which can't be controlled by my doctors.  What is going to happen to me when this injection runs out and the pain becomes considerably worse?  What if the hysterectomy doesn't work, what if it helps for a while and then it comes back somewhere else?  This disease is screwing me up mentally as well as physically.

Last night the pain was so bad I told my husband I wanted to die and god I meant it!  I'm not supposed to drink alcohol with my painkillers, but am usually okay on 2 or 3 glasses of wine each night which when mixed with my painkillers knocks me out enough to sleep with the pain and the hot flushes.  I'm not stupid I stop if I start to feel too drunk and drink plenty of water. Last night the old Pierre Smirnoff surfaced and I just got drunk and passed out.  I just wish it would end!

UPDATE 7/5/2001

UPDATE 14/5/2001

Unfortunately, things are not getting any better.  I had to increase my dosage from 20mg's a day to 40mg's a day.  That still didn't work so I went to 60mg's and I am now on 90mg's Morphine per day.  I am still in agony they have not even taken the edge off the pain.  I don't know what to do, another sufferer has suggested I try a Tens Machine which are used during labour.  So I sent my GP a fax this morning advising that the Morphine is not working and to ask her opinion on Tens.  I wish I could just have my hysterectomy tomorrow get it over and done with.   I know my operation is just 10 weeks away but it seems so long to wait when I am suffering so much.  I don't know where or who to turn to.

UPDATE 03/6/2001

Well my doctor phoned me last Thursday, things are  no better I am getting no pain relief at all and she is going to get a Tens Machine for me to try.  She is also contacting my consultant to see if she can my hysterectomy brought forward from 9 August.  I really hope it gets brought forward I am getting desperate.  What more can I say!

UPDATE 10/6/2001

Well I spoke to my doctor on Tuesday 5 June and she said I could try acupuncture as she practices it.  She also phoned my consultant's secretary.  Unfortunately, all the theatres are fully booked, but due to the severity of my case I am top of the list should there be a cancellation.  There were 2 cancellations last week so had I had this conversation last week, I would have had my hysterectomy by now.  Apparently, cancellations occur quite often so I am hopeful of a phone call any day now.  I should get a couple of days notice and work are okay about that - my boss said not to give work a thought at all. I went to see my doctor for acupuncture the following day (Wednesday 6 June) but when I got there she had managed to obtain a TENS machine.  Normally they only lend them out to see if a patient finds them helpful before advising them to buy their own.  Fortunately, in my case my doctor has said I can keep it until I have my hysterectomy.  A TENS (Transcutaneous Electrical Nerve Stimulator) machine works by sending small electrical pulses along the nerve pathway to relieve pain.  It also stimulates the body's natural pain relieving substances known as endorphins, It helps relax the muscles as well as "rubbing" the pain better electrically.  It also interrupts the pain receptors which confuse the brain so it forgets the body is in pain.  I have been using a TENS machine since Wednesday and it is helping enormously.  I wore it for work all day Friday from when I left the house at 06:30 and turned it off when I got home at about 15:15.  The pain goes away and the results lasted until went to bed at 24:00. Fantastic all this time I have been in pain and I have found something that helps.  Of course it won't be suitable for all sufferers, and you should check with your GP before you try it as some medical conditions prevent some people being able to use TENS such as people with heart conditions.

P.S. Still waiting for the phone call from the hospital!