Elizabeth's Story

I get so frustrated when I think about how many women suffer with this silent disease, and yet it is so difficult to get a diagnosis and treatment.

In November 2009 I got a confirmed diagnosis of stage 3/4 endometriosis following two laparoscopies. It was suspected by a different hospital four years previously that this was the cause of my fertility problems, but it was decided that I would not benefit from a laparoscopy as endometriosis isn’t curable; therefore it was an unnecessary surgical procedure. Pain has become such a feature of everyday normal life, so a few days after the insertion of a Mirena Coil I was stunned that I wasn’t in pain, so much so that my immediate thought was what’s happened to my body? My womb and bowel felt almost cold, then I realised that the ‘numbness’ was in fact real. This was a huge realisation of what I had been living with day in and day out as well as how much I had normalised this within my everyday life.

I started my first period before I was ten years old, and as far back as I can remember I had difficult periods. I remember not being able to take part in many PE lessons (happily as I hated them) but on reflection this was the beginning of my life with endometriosis. At the age of 15 I was given the contraceptive Pill by my GP who was not sympathetic to my distress about the pain and heaviness of my periods. I took the Pill on and off for around ten years, experimenting with different ones and even trying the contraceptive injection for a short time, none were successful in stopping breakthrough bleeding, though some helped with the pain.

At the age of 21 I experienced my first miscarriage, and this was the shape of things to come. 

I met my darling husband and married him when I was 24. My periods were erratic, unpredictable and increasingly painful. I had started experiencing excruciating bowel pain that would make my vision blurry at its peak. Under the guidance of my GP I stopped taking the Pill to give my system a break. I then suffered my second miscarriage (summer 2004). Within hours of seeing the positive result I had started my period.

By early in 2006 I was bleeding for around 16 days of the month. My GP (who has been very supportive) referred us to the fertility clinic, and I agreed to keep a daily diary. I noted down how I felt, what pain I was experiencing and where, bowel movements etc. This condition certainly makes you lose all sense of dignity. We suffered another miscarriage in March 2006. This was by far the worst loss; it was the only pregnancy that we’d tried for. We discovered I was pregnant on the Monday morning, but by that evening I was in excruciating pain, which felt like I was getting a period. The following day I started bleeding and by the Friday I had miscarried. Ten days later I got septicaemia and was rushed to hospital with a raging temperature and what felt like the worst case of flu. 

Having got an appointment in May 2006 for our local fertility clinic, we felt some hope (and apprehension). Knowing we could get pregnant was surely an advantage! 

The clinic tested for the routine things and everything came back clear – dear husband had active swimmers; on scans everything looked in the right place; our bloods were compatible – so maybe it was just down to luck! It was at this time that endometriosis was first mentioned. The consultant thought it was a distinct possibility that I had it, but he didn’t consider it to be a fertility issue, and so if I wanted further investigation I would have to ask my GP to refer me to the gynaecology department (in the same hospital under the same head gynaecologist).

Thankfully my GP agreed to refer me to the gynaecologist and in October 2006 it was decided that I needed to have a laparoscopy to investigate the possibility of endometriosis. In the week before Christmas I discovered I was pregnant, this time we had bloods taken and a scan booked with the early pregnancy unit. Sadly my HCG levels showed it wasn’t a viable pregnancy, and the scan confirmed I had indeed miscarried. I suffered again with septicaemia. I saw the gynaecologist the following April and he decided that there was little point conducting a laparoscopy as in his opinion I had endometriosis, and the operation would be an invasive procedure that could not cure the problem. Knowing no different I agreed, and left the hospital deflated, but defiant to keep positive and healthy.

The pain and blood loss by this stage was becoming increasingly difficult to manage; I adopted a wheat-free diet with the aim of managing the pain, and this helped. The pain was becoming more constant and intense, making me feel sick – often I would be sick but hadn’t associated this as a result of the pain. Dizzy spells and an awful fog of tiredness were just a normal part of everyday life.

My GP prescribed various pain and blood loss reducers, all of which worked for a month or so, and then the pain and loss came back with aggression. In January 2008 I went to see my GP again. I had been discharged from the gynaecologist and was reaching the end of my tether; my mood swings were erratic, the pain was unbearable, intercourse was increasingly painful and blood loss was increasing each month. It got to the point that during the 16 days of bleeding I was unable to leave the house without a spare change of clothes, and a simple trip to see friends or an overnight stay was a nightmare. My lovely doctor agreed to re-refer me, and I asked to see a different specialist, though the next closest was an hour’s drive from home. 

On my first trip to the new gynae department (April 2008) I found out more about my system in two hours than I did in 18 months with my previous specialist. The new specialist agreed that I didn’t need a laparoscopy as it was almost definite I had endometriosis. A scan showed that my womb was tilted and they couldn’t locate my left ovary. Other than that it all looked healthy. During that summer it was highly likely I suffered another miscarriage – this time never knowing I was pregnant until being diagnosed with septicaemia. On my follow-up appointment the gynaecologist recommended that I started taking progesterone ‘Norethisterone’ three times daily, from day 5 to day 26. This was delayed as I suffered another miscarriage only finding out again once septicaemia was diagnosed. It feels weird to know that it happened twice without ever knowing I was pregnant,  but by this stage my periods were so intense that it was just a little more painful when it was already excruciating.

Commencing Norethisterone in January 2009, the first three months were brilliant with regard to blood loss, but the pain was amplified. I noticed so many more aches and pains, intercourse was almost nonexistent and mood swings were just terrible – my husband described me as neither happy nor sad, just somewhere in the middle, not knowing which way I would go (and he still loves me!). I had agreed to give it six months, but by month four the intensive pain and severe prolonged bleeding returned. Nine days would be light bleeding, then for five-six days, just flooding. It was becoming a monthly occurrence during which I couldn’t leave the house due to the severity of the bleeding.  

In September I had an appointment with the top gynaecologist (just luck he was in that day). He suggested they perform a laparoscopy and I was stunned – having asked for it so many times I had accepted I wasn’t going to have one. He was very realistic and explained that it wouldn’t cure my symptoms. He also recommended I tried the Mirena coil, and that they could fit this at the same time as performing the operation, which was booked for mid October. 

Accepting the coil seemed a big deal as it ultimately meant there was no possibility of a little accident! But after much soul searching my hubby Duncan and I agreed that it was for the best. 

Then two weeks later I was pregnant again...

This time was different as I had morning sickness and the biggest boobs ever. My darling husband was thrilled. We both felt so different and really believed this would be it. But like Groundhog Day, the events unfolded. Within one day of seeing ‘PREGNANT’ I began to bleed. Telling my hubby that I was spotting was one of the hardest things I have ever done, we instantly switched from excited to ‘here we go again’ mode.

The hospital agreed to proceed with the laparoscopy even though it was only two weeks after the miscarriage. Sadly there were complications and I had to have the procedure repeated two weeks later. Arriving at hospital for the second op, I was full of apprehension, but fate took over and I had the top gynae surgeon who was lovely. He explained to me that there was only a 1 in 3 chance of finding the endo and that he would do his very best. Whilst in recovery I asked him whether I was 1 in 3. His reply was simply ‘yes’. At that point my life changed, I knew that no one could ever judge me again for the effect endometriosis has had on my life, I cried like I never remember crying before – tears of shear relief.

A female gynae came to see me to explain that basically my tubes and ovaries are stuck together around the wall of my pelvis and towards my bowel (but not on my bowel, which is a huge relief). There are endo cysts that need to be drained, but they have to be reduced in size first.

I asked the female consultant if this could be the reason that I suffer with early recurrent miscarriages, and she said yes. I was totally shocked by this, as I have never found any information connecting endo to early loss. She explained to me that as the miscarriages are so early, many people usually wouldn’t know they were expecting, whereas with me, as I bleed so much and for so long, I notice when I don’t and test as soon as I notice - therefore I find out. My hormones are rejecting the egg because of the endo hormones.

In December 2009, after being told that I have stage 4 endo (not stage 3-4 as previously advised), I was given the option of a course of Zoladex to shrink the endo. It was explained that in June 2010 I would then have surgery to remove as much of the endo as possible. Deciding to embark on this treatment was agonising. I remember laying there waiting for my first injection, feeling sick and scared, wondering what this drug was going to do to me. The consultant had explained that it would give me a chemical menopause, in effect, switching off the signal between my brain and ‘girl bits’. In truth, once my system got used to this intense drug the benefits far outweighed the side effects (hair loss, sores, hot flushes, itches like you wouldn’t believe, achy legs, insomnia but virtually no pain!). Any day without pain from endo is truly a miracle. 

Upon returning to see my gynae in June 2010 I was told that it was pointless for them to perform a laparoscopy, and that as I had coped well with the treatment, they wanted me to stay on it for another six months. In December 2009 we had discussed me having a hysterectomy, and now our discussions were starting to get more serious. This consultant told us that it would be futile for me to come of Zoladex and try for another pregnancy, but that I could come off the treatment and try and live with the endo without any treatment at all. Alternatively, I could opt to have a hysterectomy. I agreed to stay on the treatment until December knowing that my next appointment would be to confirm a hysterectomy. It was also confirmed at this appointment that my bowel was actually affected by endo. I guess I knew this as the only bleeding and pain I was still suffering with was from my bowel, but to be told that there’s a chance I may have to have a section of my bowel removed when I have a hysterectomy was rather freaky.

The Zoladex treatment became less effective; the injection should be given every 12 weeks, but by December the time frame had shrunk to eight weeks. I was aware that the treatment was wearing off because I was in absolute agony. My decision had been made for me; there was just no way I could come off the treatment and try and ‘manage’ my endo. A hysterectomy was my next step.

On the plus side I do not remember ever feeling as well as I do on Zoladex, my skin is glowing, I am not constantly suffering from a cold and I have been able to wear sexy underwear. 

My next visit to the consultant was in November, where we discussed a hysterectomy. We were then offered IVF... what... excuse me? I have had seven miscarriages and now after all this we are offered IVF! It broke my heart to say no, but if I felt there was any chance of it working or, if I felt stronger, maybe I would have jumped at it. I know what I would have to go through for something that has a small chance of working – why would I do that to my hubby or myself? 

It’s January 2011 and I’m now waiting to have my hysterectomy. In a nutshell it is going to be a complicated procedure. My womb, ovaries and tubes are all meshed together, and they can’t see how badly my bowel is affected. My womb, ovaries and tubes are stuck to my pelvic wall, which is close to the bits that lead to my bladder (excuse the lack of terminology). For most people a hysterectomy is major surgery, my GP has described the surgery for me as ‘as big as it gets’, the op will be around three hours long and I have a specialist team with a urologist, bowel specialist and a gynaecologist. There is a chance that I will have a stoma bag temporarily after the surgery, and to help minimise the danger to my bladder I am having a stent fitted. I look towards my surgery with anticipation, filled with the hope that it will help me to live a healthier life. I will always have endometriosis, it is an incurable, lifelong disease, but this will help me regain some control.

I am daunted about losing my 'womanhood' but I am excited about living without something that doesn't work for what it is intended for, it has given me nothing but agony. Logically I feel if it doesn't work and it’s going to cause me pain then get rid of it, I don't need it anymore. I am 33, fitter and healthier than I have ever been, my recovery will be speedy I am sure. 

I am so grateful to finally have an explanation and I don't ever have to accept someone saying to me about ‘period’ pain: 'well you're a woman, get on with it - that’s what happens'. I have a genuine reason for my trouble and our miscarriages, and for that I am so relieved.

Endometriosis has shown me an inner strength I never knew I had, made me a better person. The scars I bear are my survival and my new scar will draw a line ...the line stands for control. No longer will endometriosis hold me to ransom daily, even if I have pain I will control it.

I also thank my husband from the bottom of my heart for always being there, holding me, making the most amazing hot water bottles and for loving me unconditionally, I couldn't have got through any of this without him.

Thank you for taking the time to read my story, I know it is long. If you are a sufferer - remember you are not alone, we will support you as best we can, don't give up seeking medical support be persistent. Endometriosis will change your life, but you have the control to live your life. Last year I started Zoladex, finished my dissertation and lost a shed-load of weight, this year I will graduate, celebrate 10 years of marriage, and survive this debilitating disease. It just goes to show that anything is possible!

Love and light
Liz xxx

>> Back to personal stories