My Epic Story

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 March 2020

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.  To this day I am 100% better and my life is, at last, my own to live.

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.  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 or 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.  I had been getting pain on and off for weeks and was promptly diagnosed with a grumbling appendix.  But it turned out that the pain I'd been having was in fact caused by an ovarian cyst.  The cyst had been rubbing against the appendix and that's why I'd been in so much pain.  I was told that I was a very lucky young woman because had I come in a week later, they'd have had to remove the ovary as well.  I didn't really think about how lucky I'd been until I had my left ovary removed 11 years later.  Afer all, I was only 16 and things like ovaries and fertility didn't even cross my mind.

My periods never did settle down and if anything they became more erratic and painful.  I was prescribed the contraceptive pill when I was 17 in order to try to regulate them and stop the flooding.  I was also having sex by then and would constantly bleed afterwards but not once did my GP think to refer me to a gynaecologist.  

When I was 19 it all started to go downhill.  Instead of having pain for ten days or so, the pain would last for weeks on end.  I kept getting UTIs and was constantly asking my GP for sick notes to hand in to my tutor at college.  At the time I was studying to become a nursery nurse but there were days where I could barely get out of bed, let alone think about going to college.  And because I ended up having so much time off, I eventually failed the course.  It was a huge blow to my confidence and I really didn't understand what was happening with my life any more.  

I was 21 when I left college.  I was in a really bad place and my pain was off the scale.  I was incredibly depressed and didn't know what I was going to do with my life.  Again, nobody questioned my symptoms or wondered why I was for ever having to dash to the bathroom in order to change my sanitary pad.  Nobody noticed the dark circles or the wan look on my face when I was in pain and it seemed as though nobody cared.  It was as if there were nothing wrong with me and if I stopped obsessing over it, I would get better.  My GP put me back on antidepressants as well as birth contol just to see if things would settle down.

When I was 22 I moved out of London and into a shared house in Oxford.  Life had spiralled out of control and I no longer trusted myself.  I hated London and needed to start afresh.  I had a new GP who I liked and in spite of the pain, life started to improve.

Then in 1993 I ended up going back into hospital for a suspected ectopic pregnancy.  The pain had come back with a vengeance and my GP was concerned that something was wrong, so sent me for various ultrasounds.  When nothing showed up, she prescribed pain killers and told me to come back if it got worse.  In the end I was sent to the gynae ward as an emergency patient and ended up having a laparoscopy.  They'd found another ovarian cyst and told me that I had Polycystic Ovarian Syndrome.  I was sent home with some pain relief and that was pretty much that.

I went back to work and although the intense pain had gone I was still suffering from cyclic pain and ended up having a really miserable Christmas.  I then went back to my GP in the New Year and was told that I most likely had IBS.  My GP put me back on birth control and prescribed some Fibogel to see if it would help with my pain.  

But the pain didn't settle and my symptoms didn't improve, which is why I ended up being admitted back to the gynae ward as an emergency patient.  And so on March 28th, 1994 I was diagnosed with endometriosis.

I remember the doctors coming to see me the day after my surgery.  I remember them telling me that I had something called endometriosis but that I needn't worry because they'd 'got it all'.  They said that it was a very mild case and that I was to be given hormones that would stop my periods all together, in order for everything to settle down.  They said that I would feel much better now that they had removed the disease and that I could go back to work in 3 weeks time.  And that was pretty much that.  I was discharged 2 days after my surgery, given a follow-up appointment and was sent on my merry little way. 

I had been given no information about endometriosis. I knew nothing about the disease or that I would end up back in hospital within 6 months.  I could never have imagined that this was the start of the life of hell that I would have to endure for over two decades, or that life would never be the same.  

All I had was a badly photocopied article about endometriosis, given to me by the Ward Sister and a telephone number of the National Endometriosis Society (aka Endometriosis UK).  Naturally, I didn't phone the number because I thought that I'd been cured.  I thought that I was better now and that life was going to go back to normal, so what was the point of contacting the charity? 

But of course, the hormones didn't work.  If anything, I bled more and the pain just got worse.  I ended up taking more and more time off work and life became a living nightmare.  I couldn't understand why I was still in pain and didn't understand what was happening to me.  So on one particularly bad day, I picked up the phone and spoke to a volunteer at Endometriosis UK.  It was then that I was promptly informed that there was no cure for endometriosis and that this was now my life.  I didn't understand...why had the doctors lied to me and why had all of my pain come back?

Life, as a 24 year old wasn't exactly fun.  I spent a lot of time in and out of hospital, being admitted for pain relief, so much so, that they gynae nurses soon became familiar faces.  It was because of these mulitple admissions that I ended up catchin the eye of a really kind consultant, who ended up taking me under his wing.  

He could see that I was suffering and that the hormones weren't working.  He therefore decided to try something 'new' - a drug called Zoladex.  He said that it would 'switch off my ovaries' and would make me feel a 'bit menopausal'.  But, because my pain was so out of control, he decided that it would be worth giving it a try.  And so I did.

I was 24 years old and was completely out of my depth.  I didn't know what was happening to my body and so I put all of my faith into this kind, sympathetic doctor.  The zoladex, as far as I was aware, had worked and all of my pain went.  When I had another laparoscopy it looked as though all of my endometriosis had gone as well.  

However, as soon as I stopped having the monthly injections all of my pain came back and the cycle of hell started all over again.  At some point, something had to give and I decided to hand in my notice at work.  Working 8 hours a day, 5 days a week was slowly killing me, especially when I had to drag myself out of bed after another sleepless night.  

So there I was aged 25 living on my own, with no job and no future prospects.  I was really, really unwell and it felt as though my life was going nowhere.  It was hard being out of work, whilst my friends all had jobs that they loved.  It was hard trying to get my family and friends to understand that this was a 'real' illness and that I wasn't just making mountains out of molehills.  And as much as they could see that I was unwell, they never really 'got' it.  Some of my friends were amazing and stood by me, no matter what.  Others though, they walked away because they didn't like the 'sick' Antonia.

And then in 1997 my life changed.  I met my future husband.  We met in January '97 and he could see how much that I was struggling to come to terms with my illness.  He therefore suggested that I buy a modem and learned how to 'use the Interweb'.  I signed up with AOL and before I could say "Bob's Your Uncle", I was inundated with information as well as support from other people who were just like me. These incredible Endo Angels came into my life and for the first time in 3 years, I no longer felt lost or alone.  

When I couldn't sleep I would sign onto AOL and talk to these women who lived half-way across the world.  Instead of crying into my pillow, feeling alone and vulnerable, I was able to natter and giggle with women who understood me.  To this day I will never forget their kindness or the way they enveloped me, welcoming me to the 'endo community'.  Some of them have become lifelong friends and I know that I wouldn't be where I am today, had I not reached out to them 20 odd years ago. 

Life, as I knew it, was on the up and I started to feel human again.  My pain was sort of under control and I had this amazing boyfriend who wasn't scared of hospitals or me.  But within 4 months of meeting one another, I was back in hospital for yet another operation.

This time, I was getting a lot of pain on my left side and my consultant decided that the problem was being caused by my ovary.  So he suggested that he remove it because it looked unhealthy.

I also had a boyfriend who understood me - who listened to me and who saw the real me behind the pain.  He was, I felt, too good to be true.  Within 4 months of meeting one another, I was back in hospital and had to have my left ovary removed.  I had been getting a lot of pain on the left side and it was decided that the ovary was the problem.  According to my consultant, it had been full of endometriosis and once it had gone, he said that my pain would improve.  But it didn't.  If anything, it got worse and to top it all, I started to bleed non-stop.  I was soon back on zoladex but this time it made me really poorly.  Therefore my consultant decided to try a Mirena IUD instead and as much as it stopped the bleeding, it did nothing for my pain.  I continued to have a cycle and was as in as much pain as I had been before.  It was all a bit of a mess and I no longer knew what was going on with my body.  

So in November 1998 I went under the knife yet again.  This time though, there was no endometriosis and my consultant said that there was nothing more that he could do.  I was absolutely gutted.  If this wasn't endometriosis causing my pain, what on earth was going on?  What was wrong with me and was it in my head after all?  

Between 1998 and 2000 I saw three different gynaecologists and they all told me the same thing - my pain wasn't endometriosis related and therefore, there was nothing actually wrong with me.  

No one listened when I said that I was having cyclic symptoms.  They dismissed an ultrasound which showed signs of adhesions and when I begged my consultant for another exploratory laparoscopy he told me that it would be a waste of time as well as money.  It was more or less implied that the pain was in my head and I was promptly given the diagnosis Chronic Pelivic Pain Without Pathology.  My consultant said that there was nothing more that he could do (again) and that I would just have to learn to live with the pain. 

By this point I was miserable.  I was incredibly paranoid and thought that everyone was out to get me and if someone had told me that the sky was blue, I wouldn't have believed them.  I was angry at the world for letting me down and I was really, really unwell.

Lee and I married in September '99 and a few months later I had the Mirena removed because we wanted to try for a baby.  But my symptoms spiralled out of control and sex was out of the question due to the amount of pain that it caused.  Therefore we went back to see my consultant (a new one) and asked if he'd refer us to the IVF unit.  He said that he couldn't justify a referral, just because sex was painful.  I then asked him again, if he'd do another laparoscopy and once again, he refused.

All in all it was one of the worst times of my life.  I was newly married to the man that I loved and yet it seemed that no one wanted to help me.  It felt as though they'd all given up on me and that I had been left to live this wretched life of pain. 

Come the millenium, I ended up seeking help overseas.  I found a doctor in San Francisco who cut the endometriosis out (excsion) instead of just burning it away.  And even though I wasn't 100% certain that I had endometriosis, he agreed to try and help me.  It was a huge gamble and an expensive one at that.  What if he didn't find anything?  Would I come back to England with my tail between my legs? I hoped not.

We flew out to San Francisco on October 5 and four days later I had surgery with Dr Cook.  He found a load of adhesions as well as some endometriosis and fibrosis.  He had vindicated me and my gamble had paid off.  

A part of me felt so relieved that I had been right all along but I was also incredibly angry.  I was angry with the doctors who had told me that there had been nothing wrong with me and I was angry with the people in my life who had been sceptical about my going over to the US in the first place.  Plus there was the fact that I had had to fly all the way to America to get the help that I so desperately needed.  

 I was also really tempted to take my consultant to court and sue him for negligence but in the end I settled for a verbal apology.  I had been proven right and that was enough for me.  But because of my flight and subsequent surgery in America, my consultant made the decision that we were done.  He made me out to the be villain, even though he had been in the wrong.  He pretty much struck me off his list and made it impossible for me to see anyone else in gynae clinic, even though it was my local hospital.  

And, for a while, it seemed as though the surgery had worked.  I felt better and my pain had definitely improved.  But as soon as my periods kicked off again at the start of 2001, it all came flooding back.  I was put back on the contraceptive pill and I was back on the not-so-merry-go-round of pain, suffering and clueless doctors.

I was referred to a pain management team in Southampton and was promptly told that the pain I was feeling was all down to nerve damage.  My nerves, it seemed, had forgotten how to 'switch themselves off' and so I was prescribed drugs more commonly used for epilepsy.  Not only did they not work, they also gave me horrific side effects and truth be told, I didn't believe them.  I could feel the pain in my belly whenever I emptied my bladder and wasn't convinced that it was 'just' nerve pain.   

So come 2002, I pushed for another laparoscopy but annoyingly was informed that again, there was no sign of any endometriosis.  I just wanted to break down and cry.  Surely this pain wasn't all in my head? It certainly looked as though Dr Cook had been as thorough as he'd promised but all the same I couldn't get to grips with this whole nerve pain issue.  

Two years later, I ended up being referred to a Pain Unit in London, where I would 'learn' how to live with my chronic pain.  I was there for 4 weeks as an in-patient and was taught all about pacing and how to live a day to day life when you have chronic pain.  But the unit was set up for people with chronic back pain or leg pain.  They knew nothing about endometriosis or cyclical pain.  The CBT did nothing to help me and if anything made me even worse.  All in all, it was a disaster and I was thoroughly relieved when it was over.  Once again, it had seemed as though no one was listening to me and when I brought up the issue of fertility treatment and my endometriosis 'coming back' the therapist accused me of 'catastrophising'.  Even now, I wonder why I ended up staying there for the full 4 weeks.

On my return home I asked my consultant in Southampton to put me back on GnRH treatment just to give me some 'time off' from my periods.  I also asked him if he would refer me to the IVF unit back in Oxford.  I was turning 35 and knew that this was a now or never situation.  

The referral took some time and I did worry that they wouldn't accept us just because we couldn't have sex, but the painful sex issue didn't phase anyone and we were put on the list.  Again, I was equally relieved and equally furious.  I was furious because we could have been referred as soon as we got married - but because of my idiot consultant, it took us another 5 years to get to this point.  

I was booked in for a 'lap and dye' to check that my tubes were clear of endometriosis and then in 2005 the assisted fertility treatment started in earnest.  

We naively opted for IUI (Inter Uterine Insemmination) becauase we thought that it would be less invasive.  Little did I know that IUI shouldn't be offered to women with endometriosis because there's no down regulation.  This means that the influx of hormones can increase the risk of an endometriosis flare up and can cause further complications.  

Sadly both cycles failed and because I was so poorly after the second cycle we decided to stop the IUI all together.  It was such a tough decision to make and looking back, I keep wondering if we shouldn't have tried at least one cycle of IVF before giving up all together.  But hindsight is a beautiful thing and the what if's will always be there at the back of my mind. 

All in all 2005 was a bad year and I was relieved 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... 

It's now been 2 years since my surgery.  I have managed to wean myself off the pain medication completely.  I no longer need copious amounts of opiates because I am no longer in pain.  I no longer need antidepressants, because at last, I am living my life.  I am going out more, I have started to cook again and most importantly of all I am not constantly looking over my shoulder, worried about my next doctor's appointment.  The paranoia has gone, the anxiety has gone and for the first time in for ever, I feel well.  

I still have issues with fatigue but that's nothing in comparison to what my life used to be.  I firmly believe that having excision with the RIGHT doctor has changed my life.  

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.  

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!!!