It seems rather ironic that I am writing this story on Mother’s Day, as it is my journey with numerous gynaecological conditions that gave me motherhood, but also it is my children that sustain me as I battle my latest diagnosis and surgery.
My story begins in 1997 when my husband and I were trying for a family. After years of Dr’s telling us ‘not to worry’, temperature tracking to check ovulation, drug treatment and ruptured ovarian cysts, we found ourselves in a fertility clinic by June ’99. Step 1 was a Laparoscopy, from which I awoke to hear the words “You have severe endometriosis- so bad you will require major surgery before attempting IVF”. I was devastated, but it did answer a lot of questions. Like ‘why are my periods so heavy and painful’ ‘why do I need to take 2 days off work every month’ ‘why do I feel nauseous and clammy as I crawl on the floor to the toilet’ ‘why do I have such bad constipation and am doubled over in pain with each bowel movement’. I now had a cause for all this, which previously had been explained away by the line “but all women in our family suffer like that” It was also a relief that I need not be so stoic- this was a serious condition and I was allowed to feel pain!
So in Dec ’99 at age 29, I underwent a Laparotomy. A scar runs from above my navel to pubic bone- and for 6 hrs they removed 6 inches of my bowel, 1/3 of my bladder , some of my right ovary and ‘shaved’ the front of my uterus (pulling it together and overstitching it). The endometriosis had invaded so many organs. The Gynaecology Oncologist (who was called in to do the surgery with my Gynae assisting) said it was the worst Endo he’d ever seen, particularly with the bladder, but said I would never be able to deliver a baby naturally because the uterine wall so weak it could rupture. I now had the faith that my health was restored and after a long recovery we decided to undergo IVF treatment.
So we took the next step- pumping my body full of drugs to get as many eggs as possible and then wait to see how many embryo’s we had. But my body failed me- even on the last round on IVF we were going to try before turning to adoption- I got only 2 embryos and they were ‘poor quality’ according to the staff…but we went ahead. By this time I had had enough emotionally. They call IVF a rollercoaster for a reason!
My pregnancy was confirmed in Nov 2000- and it was twins! My joy never diminished the entire pregnancy even though the Dr’s were worried about how high risk it was. I had a bleed at 9 wks(thought it was a miscarriage) and because I’m Rh negative blood type had to go and have anti-D injections to protect the babies…then I developed heart problems (I have a valve problem from rheumatic fever), Gestational Diabetes and then my blood pressure went up, so got Pre-eclampsia. At 28 wks admitted to hosp for bed rest, and the twins were born at 33 wks (June, 2001) via caesarean. This operation took 2 hours due to the adhesions from the previous surgeries. The Dr took 45mins to reach the babies (normal time is 5mins) and half way through the epidural ran low so I felt everything! A mad panic and then given more pain relief before they continued…until our precious twins were born- a girl (Eloise, 4lb 1oz) and a boy (Hamish, 5lb 2oz). They were resuscitated and taken to neonates while I was sewn up. On looking at my pelvis the assisting Dr remarked “It looks like someone has poured cement in there”.
My recovery was long and slow, and as I visited the babies in neonates I complained, even a month later of pelvic pain when I lifted my lightweight babies. The babies came home after 2 months and I saw my Gynae who sent me for CT scan which showed my uterus had slipped between muscles and adhered to abdominal wall- hence a pulling feeling. I was advised to have a hysterectomy. I was shattered. I was 30 yrs old, had newborn twins ( one who stopped breathing during feeds and came home on an apnoea monitor for 6mths to alarm us, so we could stimulate her to breathe) and was told that my life was at risk with another pregnancy . Although we were so blessed with having our boy/girl twins, I hated having the choice taken from me. Plus to top it off, my Endo had returned with a vengeance, and I felt that this was my only escape from the pain. So I underwent an Abdominal Hysterectomy with ovary conservation. The pathology showed that I also had Adenomyosis (Endo in muscle of uterus).
Life continued, with the added diagnosis of Post Natal Depression, which was to be expected as I had all the risk factors (premature delivery, multiple birth, and IVF history), but I still had this pelvic pain. I consulted numerous Dr’s, Physio’s, tried alternative medicine, all to no avail. I found most days difficult as I couldn’t lift the twins without pain and still battled depression. I was referred to a sexual health Dr due to the continuing pain with sex, but he focussed the therapy on ‘reluctance’ and gave me books to read etc, but in my heart I knew the cause was physical.
In July ’05 I went to my GP with abdominal pain- he did a rectal exam and because I guarded with pain he thought ‘diverticulitis’ and went to hosp where the colorectal surgeon was puzzled by the cause when that diagnosis was negative. I then started having redness and pain in vulva and went through all the creams for thrush, but was negative on tests. So back to my Gynae who diagnosed ‘vulvodynia’. I went on the internet and found GAIN and their ‘vulval support group’ which I gratefully attended. During my research on the internet I found reference to ‘Pudendal Nerve Entrapment’ and asked my Gynae if I might have this. He sent me to a neurologist who told me “It is so rare love, you won’t have it” and stopped an EMG test halfway through, telling me my pelvic floor was tight and I should have BOTOX treatment. So for another year I suffered this incredible pain, to the point I couldn’t sit properly. I saw this BOTOX as my saviour. I went to a new Gynae and he carried out the 3 treatments I had, but using 3 vials of BOTOX each time. He said I had the ‘tightest pelvic muscles’ he’d ever seen. They were effective immediately and helped with my bladder and bowel dysfunction, but only gave relief for 3-4 months, but the last one only lasted a week, the same week GAIN advertised their talk with Dr Tim Pavy and Prof Vancaillie about PNE.
I dragged myself along and stood at the back and couldn’t believe what I was hearing- they were describing my symptoms and my life! I thought I must have it…at the end I congratulated Catherine A about her PNE talk. She grabbed me and took me to have a ‘carpark consult’ with Prof Vancaillie and he thought I had the right symptoms, but had to get diagnosed with a Pudendal nerve block. The next week my Gynae took me to hospital and performed the block and I got 6 hrs relief from the pain I had been living with for years! I had PNE!
Since the pain came back after the block, my quality of life was being affected. To the point I lived on the couch 24/7 in a morphine haze, and the mum’s from the twin’s school were doing a meal roster for us. I also had to leave work. (I’m a Gynae / Urology Nurse, which most think is ironic!) It was now time to consider surgery. I agreed instantly and was booked for Sydney for July 23rd, 2008, for Prof Vancaillie to carry out the ‘nerve decompression surgery’.
I was Prof Vancaillie’s 9th patient (1st from WA) and am now 9 months post op and have a lot more recovery to go, but know I am so much better than pre-op already. I am also lucky to have Catherine A as a support person, as she has travelled the same path. Plus I have met many others who have had surgery in Sydney and we all thank Catherine for her efforts to afford us the opportunity to have this treated in Australia (rather than France or USA) and for educating the public about this horrendous condition.
I thank GAIN with all my heart –just think if I hadn’t gone to that talk …I would still be suffering, left with no diagnosis and a life too unbearable to imagine.