Surgeries Since 1993
27th February 1993: Laparoscopy - 6cm Follicular left ovarian cyst
28th March 1994: Laparoscopic diathermy to patches of endometriosis found on left broad ligament & right Utero-sacral ligament.
3rd November 1994: Laparoscopy - spot of inactive endometriosis found on right broad ligament.
13th October 1995: Laparoscopy, left ovary tethered with adhesions, adhesions cut & ovary left free.
May 1996: Laparoscopy & Venogram: Venous congestion diagnosed, along with small spots of endometriosis.
18th April 1997: Laparoscopic left oopherectomy, as the ovary was adhered to side-wall of uterus. Endometriosis deposits on the right pelvic side-wall diathermied and fibrous band on left USL cut & removed.
29th October 1997: Cystoscopy to see what is causing pain with urination is normal.
13th November 1998: Laparoscopy and Cystoscopy show no signs of endometriosis, or any other pathology to suggest what could be causing chronic pelvic pain.
10th October 2000: Laparoscopy, Hysteroscopy and Cystoscopy in San Francisco, USA. Endometriosis, adhesions, fibrosis (build up of scar tissue, caused by endometriosis), and other pathology was found to be a large factor in my pain.
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.
2005: Lap & Dye to check that my tubes were clear and healthy ready for IUI. Endometriosis was found as well as some adhesions and these were removed at the time.
2006: Laparoscopy where endometriosis and pelvic congestion were diagnosed, followed by emergency bowel resection 24 hours later.
2009: Total abdominal hysterectomy.
2011: Laparoscopy where apparently only adhesions and fibrous tissue was found. Again no signs of endometriosis.
6th September 2016: Robotic Assisted Laparoscopy where endometriosis was found and excised, along with a mass of scar tissue and fibrotic tissue.
Updated August 2017
For those of you who don’t want to read the entire story, here is the short version:
I was diagnosed with endometriosis in 1994 aged 24. It soon became obvious that this was no ordinary disease and in 1996 I had to give up working full-time. After far too many surgeries and a couple of failed IUI cycles, I decided to take the only option left to me and opted for a complete hysterectomy in 2009. 6 months after my hysterectomy all of my endo symptoms came back and in 2011 I had yet another laparoscopy but was told that my pelvis was clear and that there was no more endometriosis. In spite of being told that there was nothing wrong with me, I carried on having endometriosis-like symptoms and I was pretty sure that I was having cyclic symptoms too. As much as I was told that this was ‘remembered pain’, I decided to push for blood tests and was informed that I might have something known as Ovarian Remnant Syndrome in 2014. I was promptly given Zoladex (for the umpteenth time) and all of my symptoms and pain vanished within about 4 months. Yet even this didn’t persuade my GP or my consultant that there was any active endometriosis and once again I was refused surgery. The zoladex began to lose its efficacy and so I ended up seeking help elsewhere and decided to go private. In September 2016 I had a robotic-assisted laparoscopy and had my endometriosis excised. I am now 18 weeks post-op and am already feeling better. Watch this space….
I was 12 when my periods started. I remember the exact time and place and I remember being in so much pain that I cried all the way home in the car. When I went back to school a bunch of us discovered that we had all ‘started’ and most of the girls giggled and said that it wasn’t nearly as awful as their mothers had implied. I just sat there and sobbed quietly. I thought that there was something wrong with me. I thought that I was being pathetic and never thought to question that the flooding, the pain and the nausea were anything BUT normal. Everyone just told me to ‘get a grip’ and that my periods would soon settle down. Of course they never did & I ended up suffering in silence. According to my mum, my teachers and my friends it was just part and parcel of growing up and becoming a woman.
When I was 16 I was rushed into hospital for an emergency appendectomy. It was only after the operation that I was told that it wasn’t my appendix which had been the problem. Although my appendix had looked inflamed it hadn’t been causing the pain. Instead there had been a rather large cyst on my right ovary and it had been rubbing up against the appendix. According to the surgeon, I was an extremely lucky young lady. He said that if I had been admitted at a later date, he would have had to have remove the ovary as well as my appendix. At the time I didn’t realise quite how lucky I had been. After all I was only 16 and things like ovaries and fertility didn’t even cross my mind. Looking back now I count my blessings, especially as I had to have my left ovary removed 11 years later.
Throughout my teen years my periods became increasingly erratic and painful. I was eventually given the contraceptive pill aged 17 to see if it would a) regulate my periods & b) stop the flooding. But never once did my GP think to refer me to a gynaecologist. Being on The Pill did help my periods a little bit but they were still very irregular. I would never know when I would bleed and when I did I would still flood (although thankfully for fewer days).
I was 19 when it all started to go downhill. Instead of only having pain for 10 days or so, I would sometimes have pain for weeks on end and my GP ended up prescribing some hefty painkillers. I would suffer from endless UTIs and was constantly asking my GP for sick notes to hand in to my tutor at college. I was studying to be a nursery nurse but there were some days when I could barely get out of bed, let alone drag myself into college. Because I had had so much time off I had to do an extra term but in the end due to failing 2 placements I failed the entire course. It was a huge blow and gave my confidence a massive knock. What was wrong with me? And why didn’t anyone listen when I said that I was in pain?
According to my GP, my family and most of my friends - there was nothing actually wrong with me. The pain was all in my head and if I stopped obsessing over it I would soon feel much better.
When I left college aged 21 I was in a really bad place. My pain was off the scale and I was very, very depressed. Yet still nobody questioned my symptoms nor wondered why I was always having to dash to the bathroom to change my sanitary pad. Instead I was given antidepressants and I was put back on The Pill to see if things would settle back down.
I was 23 when I had my next emergency surgery in February 1993. I had moved to Oxford and had been getting some pain on and off for weeks. But one Friday afternoon the pain was unbearable and my GP said that I needed to be seen by the gynae team. I was therefore rushed into hospital with a suspected Ectopic Pregnancy. After that was ruled out via an ultrasound, the doctors were still concerned about my pain & the fact that my pelvis had become hard to the touch (known as ‘guarding’). Eventually they decided to take me down to theatre and do an emergency laparoscopy. I was diagnosed with another ovarian cyst as well as polycystic ovaries. The gynae team were quite surprised about the PCOS diagnosis as I wasn’t showing any of the typical symptoms.
I soon went back to work and although that intense pain had gone I was still suffering from cyclic pain and had a very miserable Christmas. In fact I was in so much pain on Boxing Day that my brother phoned my grandmother and she called the doctor. He had a feel of my tummy - asked me a couple of questions and went on to diagnose me with IBS. He said that I needed to eat more fibre, drink more water and that soon my pain would settle down. You can imagine how well that visit went down with my parents. Safe to say they weren’t amused.
In spite of bulking my diet out with fibre and fluids, my pain didn’t go away. I spent more and more of my time seeing my GP and she kept on sending me back up to the hospital for further tests. They kept telling me that there was nothing wrong and that I just needed to go back on The Pill. Then on March 28th 1994, I was rushed back into hospital for my 3rd emergency surgery. I had to ask a friend from work to drive me to my GP and once again she had a feel of my tummy. She immediately had me admitted onto the gynae ward as an emergency patient and so for the 2nd time in as many years, I was rushed down to theatre for another laparoscopy. They suspected that it was another ovarian cyst, but instead they found endometriosis.
I was told that they’d found a few spots of endo & that they had burnt them off. They were going to put me on hormones which would stop my periods & make me feel much better. I was told that I could go back to work in about 3 weeks time and that they’d see me in 3 months for a follow-up. And that was that. No one informed me that endometriosis was incurable. No one told me that I would be back in theatre within 6 months and that this was to be the beginning of a life of hell. As far as I was concerned, I had been cured. I could go back to work and carry on living life to the full.
Before I left the ward, one of the nurses handed me a very badly photocopied article about endometriosis that she had found in a magazine. She said that she thought it might help me - especially as it had the number of an endometriosis charity right at the bottom of the page. But because I thought that I’d been cured, I barely glanced at the article and didn’t see the point of phoning the charity.
The hormones didn’t stop my period. If anything I bled even more and had bouts of breakthrough bleeding. My pain didn’t get better and I had to have more and more time off work. My life was becoming a nightmare and the doctors didn’t know what to do with me. I did eventually phone the number of the endometriosis charity & tried to take on board the fact that the doctors had lied to me. What was going on? Why wasn’t I better & why had my pain all started to come back?
Some days my pain was so bad I had to be admitted onto the gynae ward for pain relief and eventually my multiple admissions caught the eye of a really kind consultant. Because none of the hormone treatments had worked and because I constantly bled, my new consultant told me that I had ‘overactive ovaries’. He said that there was a fairly new treatment available for endometriosis & that it might be worth giving it a shot. It was a hormone called zoladex and it would ‘switch off’ my ovaries for 6 months. So there I was, aged 24 feeling lost, scared and very, very hormonal. The zoladex kicked in fairly quickly and all of a sudden I was going through a pseudo-menopause. It was horrible, it was weird but it did seem to make my symptoms better. And when I had a laparoscopy later that year it seemed as though the zoladex had worked.
However, the minute I came off the hormones - all of my pain and all of my symptoms returned with a vengeance. I was back where I started and I was miserable. Working 8 hours a day, 5 days a week was slowly killing me and due to sleepless nights from pain, I would have to spend my lunch hour lying down. As much as I knew that work was killing me, I was determined not to let it get the better of me. But eventually something had to give.
My GP signed me off sick for 3 weeks in August ’95 and my boss didn’t take it very well. Whilst I’d been away all of my responsibilities had been given to other people. Even though I had been there for over a year, it felt as though my boss no longer trusted me to do my job. I was therefore given all of the mundane things to do, such as ordering coffees, booking conference rooms & ordering stationery. Everything that I had worked hard to build up over those 18 months was gone. And because I looked so well from sitting in the garden - no one truly believed that I had been unwell. I knew that I was due to have more surgery in October & instead of taking more time off sick I informed my boss that I would take the time off as unpaid leave. But in my heart of hearts I knew that I couldn’t work there any longer and in the end handed in my notice. They were looking for an excuse to fire me & more time off sick would have been their perfect way out. I refused to give them the satisfaction. Once my notice had been given, the atmosphere at work was horrid & because I still felt unwell, my GP signed me off sick for the remaining three weeks.
That was the last time I ever managed to work full time. The following year I did managed to do some temp work but eventually had to give that up too.
It was hard being a 25/26 year old out of work. It was hard trying to get my family to understand that this was a ‘real’ illness and that I wasn’t making mountains out of molehills. It was hard getting my friends to listen to me & to understand what was going on with my life. Some of my friends were amazing. Others just walked out of my life. They didn’t like the ‘sick’ Antonia.
By the end of 1996 I was a mess. I felt very alone and knew almost no one with endometriosis. My family kept telling me to pull myself together and my personal life was practically non existent. Then in 1997 my life changed. In January ’97 I met my future husband and he could see how much I was struggling. He suggested that I buy a modem so that I could get online & learn more about this disease of mine. Having felt very alone & scared, I was suddenly surrounded by women who understood me. Because I was using AOL, the majority of these women were in America and some of them became lifetime friends. There were very few women from the UK online back then - so having this network of endo angels was, at times, a life saver. When I couldn’t sleep, it meant that I could go online and natter to these women in the early hours of the morning; the time when I felt most vulnerable and alone. Instead of crying into my pillow, I could talk to women who understood me. For the first time since my diagnosis, I no longer felt lost or scared.
When I met Lee I was actually feeling quite well but within 4 months of knowing one another, I ended up back in hospital and had to have my left ovary removed. I was getting a lot of left sided pain & my consultant reckoned that it was my ovary which was causing the problem. It was enlarged and unhealthy and needed to be removed. It was, apparently, full of endometriosis & once it was gone my consultant reckoned that my pain would improve. Soon after the surgery I was bleeding non-stop and eventually went back on zoladex. Even though it made my symptoms better, it made me really, really unwell and it was then decided that I would have a Mirena IUI fitted. As much as the Mirena stopped the bleeding, it did nothing for my pain and I continued to have a cycle. It was all a bit of a mess & I wasn’t really sure what was going on any more.
In November ’98 I had yet another laparoscopy but this time was told that there was no endometriosis. I was gutted. What was going on & where was all the pain coming from? For the next two years I was told by 3 different consultants that there was nothing wrong with me and that my symptoms couldn’t possibly be endo-related.
No one listened to me when I said that I was still having cyclic symptoms & when an ultrasound showed signs of adhesions, my consultant told me that another laparoscopy would be a waste of time, effort and money. One gynaecologist I saw said that the problem was chronic candidiasis & prescribed me anti-fungal tablets for 18 months. Before I even considered taking the tablets, I decided to be tested for candida and wasn’t at all surprised when the tests came back negative. It was more or less implied that the pain was in my head and I was diagnosed with chronic pelvic pain. My consultant told me that there was nothing that they could do and that I would just have to learn to live with the pain. I was miserable, paranoid and had no idea what I was going to do with my life.
Lee and I were married in September ’99 and several months later I had the Mirena IUD removed because we wanted to try for a baby. But because my pain was worsening and because sex was too painful it just wasn’t something that we were able to do without some help. My consultant said that he couldn’t refer us to the IVF unit just because we couldn’t have sex and once again refused to operate.
Come the millennium I was a paranoid mess. I didn’t know what to do or who to see. All I knew was that I was in pain and it felt as though everyone had given up on me. That’s why I eventually decided to seek help overseas and flew half way around the world in order to have surgery in America. From chatting to women online, I began to get the impression that the Americans were much further forward with their surgical techniques. Instead of just burning the endometriosis away using diathermy/laser, doctors were cutting it out using a technique known as excision. But because I wasn’t even sure that I did have endometriosis, I ended up choosing a surgeon who treated women who had both endo and chronic pelvic pain. I knew that it was a huge gamble. I knew that it could be a really expensive mistake and that there was no guarantee that Dr Cook would be able to help me. But because I was so desperate, I was prepared to take that risk.
So on Thursday, October 5th, Lee and I flew out to San Francisco and 4 days later I had surgery. Dr Cook found a load of adhesions as well as some endometriosis and fibrotic tissue. He had vindicated me and my gamble had paid off. Before we had flown out, my family had told me that I was making a huge mistake & various people seemed to think that I was completely mad. To know that I had been right all along felt amazing. There was a part of me which was elated but at the same time I was also really, really angry. I was angry with the doctors who had told me that there was nothing wrong with me. I was angry with the naysayers and with the sceptics. And I was angry that I had had to fly all the way to America in order to seek help.
I was really tempted to take my consultant to court and sue him for negligence but in the end I settled for a written and verbal apology. My pain wasn’t all in my head and there had, in fact, been something wrong.
The week after my operation, Lee and I stayed with an amazing couple in East Bay San Francisco who opened their house to us and let us stay in their spare room. Peggy had endometriosis and knew what it was like after surgery, so she and Roy had come up with the idea of the Endo Inn - a home from home, where anyone from out of state can stay whilst having surgery with Dr Cook.
During our two week stay in America, I met some incredible people and there were a lot of tears when it came to saying our goodbyes.
And for a while, it seemed as though the surgery had worked. I felt better and my pain had improved. But as soon as my periods came back at the beginning of 2001 all of my pain came back as well. My GP put me back on The Pill and advised me to take it back to back to see if it would help.
I was referred to various consultants and started seeing a team in Southampton who specialised in Pelvic Pain. I was told that the reason for my pain was nerve damage and that my nerves had ‘forgotten’ how to switch themselves off. The latest research showed that anti-epileptic drugs could help with chronic pain and so I was prescribed various concoctions of these drugs but all to no avail. They either made me bleed or they gave me headaches and none of them did anything for my pain.
Truth be told, I didn’t believe them. I could feel the pain in my belly. Of course there was something wrong with me. What on earth were these doctors talking about?
In October 2002 I pushed for another laparoscopy but again was told that there was no sign of endometriosis. Part of me was relieved but part of me wanted to cry. Surely this pain wasn’t all ‘in my head’? However, it did show that Dr Cook had been as thorough as he had promised and that the surgery in America had been worth it. Even so I couldn’t quite get to grips with the whole nerve pain concept and so eventually decided to go and see a neurosurgeon in Oxford. He told me that it wasn’t so much as nerve damage causing my pain but more that my nerve endings had become hyper-sensitive. He reconfirmed the diagnosis I had been given in Southampton and said that there was very little that they could do to help the pain.
The consultant in Southampton then referred me to a pain management unit in London called INPUT, which would ‘teach’ me how to live with chronic pain. I was slightly sceptical but I decided to give it a try. After all - if I could learn how to live with pain, perhaps I would feel well enough to try for a baby.
My referral took a year to go through and in January 2004 I went up to London and booked in for a four week stay . There they taught us how to exercise, how to manage our pain and how to live a day to day life. They were great when it came to back pain, leg pain and other forms of chronic pain, but they just didn’t understand the concept of endometriosis in that my pain was both acute and chronic.
The course was very tiring and very, very emotional. There were some techniques which I took away with me but I found the CBT a complete waste of time & it felt as though the staff weren’t listening to me. Yet again I felt as though my pain was being marginalised and whenever I raised a particular concern I was told that I was ‘catastrophising’.
When I got home from INPUT in February 2004 I asked my consultant if I could have 6 months ‘off’ from my periods and was given another GnRH analogue called Prostap. As regular as my periods were, they were still hell on earth & I just couldn’t cope with them. I needed a break and some time out from it all.
I also asked my consultant in Southampton to refer me to the IVF unit in Oxford as I was turning 35 and didn’t want to wait much longer before we tried for a baby. The referral did take some time and I was really worried that they would refuse us because we couldn’t have sex. However, we were put on the list & the painful sex issue didn’t seem to phase anyone. I was really cross because we had been told 5 years earlier that we weren’t eligible for assisted fertility. I was booked in for a ‘Lap & Dye’ to make sure that my fallopian tubes were healthy and then in 2005 the IUI started in earnest.
We had opted for IUI because we believed that it would be less invasive. Little did I know that IUI shouldn’t be offered to women with endometriosis because there is no ‘down regulation’ and it can increase the risk of endometriosis flare ups. Sadly both cycles failed and because I was so poorly after the 2nd cycle we decided to stop the IUI all together. It was a really difficult decision to make - especially as we both wanted to become parents. My endometriosis symptoms all came back and within months I was incredibly unwell again. 2005 was a bad year all around and I was glad to see the back of it.
In 2006 we decided to move house but because my pain was now out of control I thought I'd go private and have another laparoscopy. However, something went really wrong and 24 hours after my laparoscopy I was back in hospital having emergency bowel surgery. Following my laparoscopy my consultant had used Adept to ‘stop’ adhesions from forming. But when one is skinny a litre of fluid is a heck of a lot & it had erupted like a volcano. The fluid was literally pouring out of my main incision below the belly button but no one seemed to think that it was an issue. I was sent home with spare dressings & was told that the adept would soon calm down. I'm fairly certain that if someone had checked my incision & stitches prior to my discharge, a disaster could have been averted.
All I can say is thank goodness for the district nurse. I was on my own & it was a Saturday, so I had no car and no way of contacting the consultant who had operated on me the day before. When I went to change my dressing I had noticed a small lump on my belly button and decided to phone the out of hours surgery. The doctor sent the district nurse round to take a look at my tummy and by the time she arrived the small lump had almost doubled in size. She took one look at me, panicked and said that I needed to see the doctor straight away. He took one look at my tummy and said that I needed to go straight to hospital. He said that it was a herniated bowel & that I needed surgery ASAP. I had to phone Lee (who was house hunting in Salisbury) and told him that he needed to come home because I was going back into hospital. I was terrified. I was told that my stitches had split and that my small bowel was now poking out of my incision. I was really lucky that I had spotted it when I did & that I had such an amazing district nurse come out to see me.
I was rushed to hospital and taken straight up to the Emergency Surgical Unit. They pumped me full of morphine & put me in a side room whilst they waited for a theatre slot. I don’t remember signing my consent form but I do remember all of the doctors and nurses coming to look at me, as though I were in a freak show. I remember Lee arriving with a suitcase and speaking to the consultant. Obviously he didn’t really know what was going on and I don’t think that he realised quite how serious it was until his conversation with the colorectal surgeon. In the end I had to have a bowel resection and had 6cm of small intestine removed. I have no doubt whatsoever that the district nurse and the staff on the ESU saved my life. Their care and expertise was outstanding and I will for ever be grateful to them and the NHS.
In September 2006 we moved house to see if it would improve my quality of life. Living in a city should have made life easier but my pain continued to haunt me and life became increasingly difficult and depressing. So in 2009 I finally asked my consultant if I could have a hysterectomy. As far as I knew, this would be the cure. This would give me back my life and it would mean that I could, at last, live life to the full. I had no idea that a hysterectomy is NOT the answer when it comes to endometriosis.
I had my surgery in March 2009 and for a while I did actually feel better. This, I’ve since learned, is something called the Placebo effect.
6 months after my surgery I started taking HRT and instead of making me feel better it just made me really unwell again and all of my endo symptoms came back. Eventually in 2011 my consultant reluctantly did another laparoscopy, but said that she couldn’t see any endometriosis and that my pain was most likely ‘remembered pain’.
She then discharged me from the gynae clinic in 2013 and referred me to the pain unit instead. Once again I didn’t feel that my pain was being taken seriously and so found a pain doctor who did actually listen. I was having cyclic symptoms and he agreed that was a bit strange, so he asked my GP to run a series of blood tests in order to check my hormone levels. Although my oestrogen was low, my FSH was showing signs that I wasn’t menopausal and that something ‘weird’ was going on.
In May 2014 I went to see yet another gynaecologist who diagnosed me with suspected ovarian remnant syndrome and promptly put me on a 5 month course of zoladex. She said that if my symptoms improved then it was more than likely that I had some ovarian tissue somewhere in my body. Within 3 months the pain was gone and I began to feel hopeful again. However, my gynaecologist said that there was no way that I could stay on the zoladex indefinitely and that the best thing would be to suppress my ovaries until I hit the natural menopause. But because I was only 44 at the time, that would have meant 6+ years on hormones. Obviously this was not an ideal scenario and it sparked off yet another battle of wills. After trying various ovarian suppressants and finding that none of them worked, except for the zoladex I was back where I started. The pain was better but it was not an ideal situation. In November 2015 I was referred to her NHS clinic and in January 2016 she booked me in for an MRI to see if there was any obvious signs of endometriosis or ovarian tissue. When the results showed that there was ‘nothing’ to be seen, my consultant began to dig her heels in and said that there was really no point in my having further surgery. However, by this time I had been on the zoladex for over a year and its efficacy was beginning to wear off. In April 2016 I had my final appointment at the gynae clinic and once again was told, by a senior registrar, that surgery would be a waste of time.
When I got home from London I was fuming. I had had it with the NHS and I was fed up with being pushed from pillar to post. I was tired of these so-called endometriosis specialists dismissing my pain and my symptoms. I had been posting various posts on Nancy’s Nook on Facebook throughout 2015 and had read that excision surgery was the gold standard when it came to endometriosis. When my consultant kept stalling and telling me that surgery would be a waste of time, the ladies on The Nook said that it was time to find a new doctor. And because I knew that I had the funds to pay for private healthcare, I decided that my best bet would be to find a surgeon who a) knew how to excise endometriosis and b) would listen to me.
Having already been overseas for surgery I knew that this wasn’t something that I wanted to do again. Ideally, if I could find someone in London, then at least I would get the aftercare and it wouldn’t be too far to travel for appointments. So after doing a load of research and asking a LOT of questions on The Nook I finally contacted an endometriosis specialist called Peter Barton-Smith.
I had heard a lot of good things about him and so tentatively contacted him in May 2016. He responded immediately and set an appointment date for June. He wanted me to have an ultrasound prior to seeing him, in order to see if there was any sign of either endometriosis or ovarian tissue. But because I was still on zoladex, the chances of any ovarian tissue showing up were going to be slim. As for endometriosis - I didn’t even know that it could be seen on ultrasound!
On June 8th 2016 I saw the most amazing doctor in Harley Street called Mr Jurkovic. He spent a good 15-20 minutes scanning me and even though it caused a LOT of pain, it was worth every minute. He said that he couldn’t see any evidence of ovarian tissue but that he had spotted some deep infiltrating endometriosis (D.I.E.) over on the left side, which was where ALL of my pain had been whenever I’d had internal examinations or scans. He said that the nodule looked as though it were about 6mm in size and even though he couldn’t see any more, he said that the ONLY way to ensure that there was endometriosis there, would be for me to have another laparoscopy.
As soon as I had seen Mr Jurkovic, I tootled over to The Princess Grace Hospital and met Peter for the first time. I think that both Peter and Mr Jurkovic were worried about my having more surgery. I know that Peter had doubts about operating on someone who only had a 6mm nodule of endometriosis. But because he had seen photos from my 2011 laparoscopy showing a mass of scar tissue on the left side, he was fairly certain that he would find the ovarian remnant hiding underneath it all. That in itself would have been worth the effort and I left his office with a huge smile on my face. Not only had he listened to me, he hadn’t dismissed my symptoms as just being ‘remembered pain’.
Initially I was booked in for surgery for the 2nd week of July but because he couldn’t find an anaesthetist, the surgery was postponed until the first week of September.
On Tuesday 6th September 2016, I had my first robotic assisted laparoscopy. As well as removing a LOT of scar tissue and fibrosis, he ended up excising a 5cm nodule of D.I.E. This was the 6mm nodule which had shown up on the ultrasound! I guess that it was hiding and that’s why only a tiny bit of it showed up when I had the scan. He said that it was ‘massive’ and that when he started to ‘dig it out’ he just kept on going. In order to have grown to that size, he reckoned that it had been there decades and that it had been missed time and time again. Like all D.I.E nodules the majority of the tissue was fibrotic (scar tissue). But when the results came back from the lab it showed that there had been active endometriosis in amongst all of that yuck. And it was yuck. It was disgusting. When Peter showed me the video of my surgery the following day you could see how inflamed it was. He said that because of where it had been situated, it was more than likely that this had been the cause of all of my pain, including painful sex and painful urination.
I admit that I began to cry when I saw just how revolting that thing was. It had been missed time and time again by doctors who either didn’t know what they were looking for - or by doctors who just burned the top off and left the bottom bit behind.
The first time I emptied my bladder post-op there was NO PAIN. What’s amazing is that pain still hasn’t come back. I’ve had my first internal examination since then and for the first time in decades I didn’t hit the ceiling. I believe I even smiled. I can’t remember a time where I didn’t have pain with emptying my bladder or internal examinations.
To be able to have a pee without that feeling of dread or worry is something that I’m still getting used to. I’m also trying to get used to the idea that I might be able to have sex again...
I have almost reached the 12 month mark. It's been 11 months since my surgery with Peter and although I am having issues with pain (most likely related to my pelvic floor) I am so much better than I was. I have reduced my pain medication to a level I never thought possible 12 months ago and am still slowly weaning myself off it. Before my surgery I was taking a maximum dose of 180mg of morphine a day (90mg slow release pluse 90mg fast acting for breakthrough pain). These days on a good day I don't even need pain relief and on a bad day the maximum dose is 50mg morphine (20mg slow release and 30mg for breakthrough pain).
My main issue now is fatigue. If it weren't for the chronic fatigue I am sure that I would be up and about, running around like a mad woman. I had loads of energy after my surgery and for about 9 months I was fairly certain that all would be well. I stupidly went back on HRT and all of my pain kicked off again. I am due another TVS but am fairly certain that there won't be any endometriosis in sight.
I have been referred to yet another pain management team - but this time it is someone who understands endometriosis, nerve damage & pelvic floor dysfunction. I am seeing an incredible physiotherapist who is teaching me how to relax my pelvic floor muscles (is my belly floppy?). Already I am learning not to hold my tummy in & am just letting it all flop out. The difference in my pain is incredible.
I firmly believe that having excision with the RIGHT doctor has changed my life. And once I get this fatigue sorted out, there will be no stopping me.
I know that I’m lucky. I know that I wouldn’t have been able to have surgery with one of the top surgeons in the UK if I didn’t have the money to pay for it. I know that having private surgery in the UK is a luxury but sometimes you just have to go for it, especially in a country where endometriosis is not taken seriously.
Excision has changed my life; of that I’m certain. I’m still pinching myself and I’m taking it one day at a time. If I still feel this well in a year’s time then I have decided that I want to do something to help other women with endo - other than just sit here and write about it.
Endometriosis is a horrid disease. It’s been the bane of my life for over 20 years. If this surgery means that I am actually able to live my life - then it’s been worth every single penny.
(If anyone is interested in watching the video of my excision surgery I have uploaded the file to YouTube. I know it sounds weird but it is actually quite interesting and you can see that disgusting nodule for yourselves: https://youtu.be/PWgnT2fZfLo)
And if you've managed to stay with me right until the end - thank you. This is the reason why my website is called Antonia's Epic Endometriosis Journey!!!
Oh come on, surely it can't be that bad can it?
You have chronic candidiasis