LIVING WITH ENDOMETRIOSIS AND CHRONIC PELVIC PAIN

MY STORY

SURGERIES SINCE 1993

6th November 2002: Laparoscopy in London shows no signs of endometriosis, adhesions or any other pathology, which suggests that pelvic pain is caused by something other than endo.

Where do I begin??? I suppose that it all goes back to when I was sixteen. Although my periods started when I was fourteen, and although they were nasty, I didn't really think that they were abnormal. I knew that they were different to those of my friends, but I used to think that I was just making more of a fuss than they were.

At the age of sixteen, however, things did start to go wrong - and I was rushed into hospital with suspected appendicitis. In fact, I had an ovarian cyst on my right ovary, and was lucky enough to catch it in time. It seems that it was rather large, and that if I had gone in any later, they would have had to remove the ovary itself. At the time, it didn't even occur to me that it might affect my fertility. You tend not to at the age of sixteen!!!

After that, my periods continued to be a pain. I would sometimes feel so sick and unwell, I couldn't move. Because I was away at school, people would think that I was making it up, or that I was just being pathetic. No one actually thought to ask if what I was going through was normal. Even my GP didn't seem to think that there was anything odd about my pain. Instead at the age of 17 he put me on the contraceptive pill to see if would a) help with my periods and b) help with the pain.

To an extent, my periods did get better, they were still erratic, even while I was on the Pill, and still painful when I had a withdrawal bleed. More than anything, I used to get incredibly bad pain just before and after I had had a period - as well as during and after sex. I honestly thought that I was doing something wrong - and that all of this pain was somehow brought on by me.

I suppose that I just managed to get on with it somehow, and continued to plod through life as best as I could. I stayed on the Pill for a while and then came off it because it didn't agree with me. I was probably on and off it over a period of about five years, before I ended up in hospital again with another ovarian cyst.

This time it was on my left ovary, and had been hiding, so it couldn't be seen on the ultrasound. During the operation they also found that my ovaries were polycystic, and they said that this accounted for a lot of the pain that I had as well. I soon went back to work, and although the intense pain had gone, I still suffered from a nagging feeling, which wouldn't go away.

By the end of that year (1993) I was suffering from all the same pain again, and was practically unable to move. Christmas that year was no fun, and in the end I was told that I had IBS. I was told to eat more fibre and greens, and that it would help with the pain. Of course, it didn't.

I still managed to go to work every day, but it was becoming a real struggle, and eventually my GP suspected that I might have another ovarian cyst. She sent me into hospital, and in March 1994, I was diagnosed with endometriosis.

Because there was so little information available from the hospital, I hadn't really grasped the fact that this disease was going to change my life, in such as way as it has.

I was told that my endo was mild, and that it had all been burnt away. I was put on provera tablets, and told that my periods would stop. They told me to come back in six weeks time for a follow-up, and that was pretty much that. No explanation about what had happened, and no information about what endometriosis was.

I did get a photo-copy of an article, with the address and phone number of a support group in the UK - The National Endometriosis Society - and joined up as a member. I read as much as I thought I needed to about the disease, but decided that I didn't really need to know everything, because I was now better.

Of course, my periods didn't stop while I was on the drug and neither did the pain. I continued on a downward spiral, needing more pain relief and different hormonal treatments. I think that they tried me on pretty much everything they had apart from Danazol. In the space of five months I had been given provera tablets, dimetriose and zoladex. After I had been on the zoladex for three months, they did another laparoscopy and found no sign of the endo. Apparently it had worked.

As soon as I knew that I would be having yet another laparoscopy, I handed in my notice at work. I had been there eighteen months, had been off sick for six months or so, on and off, and I knew that we had reached stale-mate. I wasn't going to give them the pleasure of asking me to leave, so I got in first.

Since then, I've had several more laparoscopies and have been on yet more hormonal treatments. It hasn't been the easiest of times, I have to confess.

In 1998 I had yet another laparoscopy, where I was told that there was nothing to be found. The doctors didn't know what was wrong with me, and I continued to have far too much pain. I had periods that wouldn't stop - one lasted for about six weeks. I was put back onto Zoladex, but it only made me ill. So in the end I had a Mirena Coil put in. That was fitted in 1997, and still the pain continued, which is why they decided to take another look.

Between 1998 and 2000, I had two of the most difficult years of my life. I was so miserable and couldn't believe that I had all of this pain. I was told that I now had Chronic Pelvic Pain without Pathology - and that they didn't know where my pain was coming from, or why I was suffering so much.

In September 1999 Lee and I got married, and had a really spectacular day, but it was marred by my pain and feeling so tired. I would have loved to have a dance in the evening, but there was no way that I could have coped.

That year I also had my mirena coil removed, because we wanted to start thinking about having children. I came off the hormone treatments and tried to stop taking my painkillers too, but that was too much. However, my periods didn't return, and although I felt that I was going through the motions, nothing actually happened.

In 2000 I was getting so desperate about the pain and not being listened to, I arranged to go and see a doctor out in America. I had been in touch with various friends on the Internet, and asked about decent doctors. In the end I decided to get in touch with Dr.Andrew Cook, who at the time worked in New Orleans. He said that he would try his best to get to the bottom of my pain, and that I could come and see him any time.

We were moving house that year, so I wanted to get the move out of the way, before we went anywhere. Therefore we set up a date for October 2000. Everything was set, and the plane tickets were almost booked, when Dr. Cook called up and told me that he was moving to San Francisco. He asked if I would still come out, and of course I said yes. There was no going back on this one.

I think that people thought I was slightly crazy, flying all the way out to the US for surgery. After all, I had been told that there was nothing wrong with me, and I was now spending an awful lot of money, to try to find out if there was. I was taking a huge gamble, and knew that I would probably come back to England with my tail between my legs.

About four days before we flew out on October 5th (my birthday), my period started again. It was the first one I had had, since the mirena coil had been removed a year earlier. I suppose that I should have seen it as a sign of things to come.

On October 6th, Lee and I met Dr. Cook for the first time, and he was incredibly kind. He asked loads of questions, and then examined me. We had agreed that he was going to do a laparoscopy where I would be awake, so that we could map my pain. However, during his examination of me, he said that he had found enough to be going on with, just by the state of what he could see on my ultrasound.

He had decided to do an internal ultrasound, and so had me gripping the hands of Lee and his Nurse Practitioner, while he took a good look around. To begin with he was puzzled, because he couldn't see my uterus on the scan. As he moved the wand around, he pushed it further and further into the left hand side of my pelvis - and lo and behold - there it was!

Earlier he had read in my notes that my uterus was "slightly displaced to the left", and so had expected it to be a bit wonky. He hadn't expected not to be able to find it!!!!

On October 10th 2000, I went into hospital and had surgery with Dr. Cook. In the end it lasted for about three and a half hours. He did find endometriosis, along with a whole lot of other stuff and did an awful lot of laser surgery and work.

After spending a week with the most amazing couple in San Francisco, Lee and I flew home. It was an interesting flight, to say the least - but at least I had enough pain killers to keep me happy.

I have to admit that the pain did get better, and for a while I honestly believed that I was on the road to recovery. It did take a long time to recover, but once I was back on my feet, I was able to do so much more.

I didn't have another period until January 2001, and that was when all hell broke loose again. I couldn't believe that it was so bad, not after all of that surgery I had been through. I was put back on the contraceptive pill, and was told to take it continuously. I took it for six weeks at a time and then had to have a bleed, because I knew that I wouldn't cope otherwise. If I did take it non-stop, I would bleed anyway.

The pain definitely got better for about six months, and then it started to get worse again. I went to see a gynaecologist in London, and he referred me to a gynaecologist in Southampton who specialised in Pelvic Pain. The gynae in London said that he didn't think that I had endo, not after all the surgery that I had had, and said that he thought that it was more likely pelvic pain syndrome. He said that he didn't know enough about it, to be able to help, which is why I was referred to Southampton.

I saw an extremely nice gynaceologist consultant, who listened to my story and who believed in my pain. He runs a pelvic pain clinic there, along with a pain management doctor, a pain psychologist and a physio-therapist. This meant that I saw them all in one clinic, rather than having to book in different appointments at different hospitals. It was all very strange, but at least they listened. I have to admit that it felt like a breath of fresh air.

No one was telling me that my pain was in my head, nor were they telling me that they couldn't help. In fact they were telling me that they wanted to help as much as they could, but that I needed to realise there was no miracle cure.

I was put on some very strong drugs which are usually used for epilepsy, in order to try and help with my pain. They made me extremely unwell and I had to weigh up whether I wanted to feel unwell, or whether I wanted to live with my pain. I opted for the latter.

They explained to me that the reason why I was in so much pain was something to do with my nerves. Because of all the endometriosis and surgeries I've had over the years my nerves were now hyper-sensitive. They've forgotten how to switch off, even though there is nothing there actually causing the damage.

I have to admit that I found this explanation incredibly difficult to take in. Of course there was something wrong with me. I could feel it inside my belly. What on earth was this doctor telling me?

This is why I was given such strong drugs but in the end I couldn't cope with the side effects any more. I just felt too unwell on them.

By October 2002 I decided to give up on the drugs all together. I came off the morphine and changed it for a completely different concoction of pain relief. I also decided to have another laparoscopy. I needed to know what was going on inside my belly - for peace of mind, more than anything else. I could feel that familiar paranoia creeping back up on me and didn't want to go through that agony all over again.

In the end they didn't find anything wrong with me. My pelvis was clear of endo and adhesions, so at least I had that to hold onto. It meant that the surgery I had had done in America had been worth it and that Dr. Cook had been as thorough as he had promised.

It also meant that I felt confused. Here I was still in pain and I couldn't really get to grips with the why or how. I know that I should have been thankful and relieved but I wasn't. Not straight away.

That's why I decided to make an appointment to see a Neuro Surgeon. I needed some answers. He told me that it wasn't so much nerve damage which was causing my pain but nerve hyper-sensitivity. He was basically re-confirming what I had been told in Southampton and that put my mind at rest. I wasn't going crazy after all.

I then decided to try homeopathy to see if it would help with my pain and my general well-being. It did - to an extent. I can't say it made my pain any better, but it did help with my mood. It also meant that I had regular periods for the first time in my life - which was brilliant. I was now more in charge of them, because I knew when they were coming, rather than having to second guess all of the time.

I went back to Southampton and ended up being referred to a pain management unit in London called INPUT. I had to wait for over a year for my referral, and have just completed the program (February 2004).

I have spent four weeks at INPUT, learning new techniques about how to manage and live with my pain. It's been an extremely tiring and emotional few weeks but I do believe it's been worth every minute. I've come away from the course feeling better about myself and better about the future.

I'm also back on the GnRH drug therapy. I decided to have 6 months "off" from my periods. As regular as they were, they were still hell on earth and I just couldn't cope with them any longer. I needed a break.

I'm really glad that I was referred to Southampton & feel lucky that I was accepted onto the INPUT course. It's given me a new outlook towards my pain and has helped me realise that being in pain isn't the be all and end all to my life.

Life can go on - despite being in pain. I just need to make sure that I stay motivated enough to keep going with the exercises and stretches. It's all very well doing them when you're in class, it's much harder doing them when you're at home!!!

I know that my endometriosis could come back at any time, but I can't let it rule my life for the rest of my life.

As I was told on many occasion in INPUT - we can't predict the future - therefore there is no point in my worrying all of the time about my endo coming back. I've already missed out on ten years of my life because of this disease. I refuse to miss out on another ten years.

My Story | What is Endometriosis | What are the Symptoms | Diagnosing Endo | Treating Endo | Oxford's Support Group | A Letter To Lee | Other People's Reactions | What about the Men? | Coming to Terms with Pain | Feelings invoked by my Pain | Problems With Sleep | Tips and Tricks | Poems and Quotations | Endometriosis Links | Endo Sisters | Women's Health Links | Pelvic Pain Links | Some Light Relief |

What Is Endometriosis?

What Are The Symptoms?

Diagnosing Endo

Treatment Options for Endo

Oxford Support Group

A Letter To Lee

Other People's Reactions

What About the Men?

Coming to Terms with Pain

Me and My Pain

Problems With Sleep

Tips and Tricks

Poems and Quotations

Endometriosis Links

Endo Sisters

Women's Health

Pelvic Pain Links

Some Light Relief