I am a 42 year old woman from Perth, married with kids and prior to having problems with pelvic pain, was a Urology/Gynaecology Registered Nurse on a busy surgical ward.
My journey with gynaecological issues started in 1983 when I was a teenager.My periods were always extremely painful and heavy causing me to miss school and later university for the first 2 days of my cycle. I always wondered why at this time I felt clammy and nauseous, and was doubled over with constipation and with every bowel movement? This regular scenario was always explained away by my mother with the line “but all women in our family suffer like that”.
I later started sexual relations and the pain during and post intercourse was immense. I felt like my skin was burning and had to use cold washcloths between my legs to try and gain relief from the excruciating pain. I felt my vulval skin was swollen for days and found it uncomfortable to sit for 2 days post sex. This wasn’t always present, and would come and go during this period of my life, so I am unsure if this was related to what was to be my later diagnosis. Once again I just assumed that this was normal…I never told a soul and sadly just put up with it.
The whole path to finding answers didn’t really come until 1997 when my husband and I were trying for a family. After years of doctors telling us ‘not to worry’, temperature tracking to check ovulation, drug treatment and ruptured ovarian cysts, we found ourselves in a fertility clinic. 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 about the experiences listed previously. I now had a reason for all this and also felt 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 gynaecological 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. He also said I would never be able to deliver a baby naturally because the uterine wall so weak it could rupture. But 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 waiting to see how many embryos 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 doctors 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 hospital 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 doctor 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 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 doctor remarked “It looks like someone has poured cement in there”.
My recovery was long and slow. When I visited the babies in neonates a month after delivery, I complained 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 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 doctors, physios, tried alternative medicine, all to no avail. I found most days difficult, as I couldn’t lift the twins without pain or push the pram and still battled depression. I was referred to a sexual health doctor due to the continuing pain with sex, but he focused 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 /pelvic pain- he did a rectal exam and because I reacted with pain he thought it was ‘diverticulitis’ and went to hosp where the colorectal surgeon was puzzled when that diagnosis proved negative. I then started having redness and pain in vulva and went through all the creams for thrush, but was negative on tests. So I went back to my gynae who diagnosed ‘Vulvodynia’. He told me to do salt water baths twice a day and come back in 3 mths. I felt totally abandoned, as if the doctor didn’t really understand the extent of my suffering. At this stage I was back at work doing 2 shifts a week and would ask other gynaecologists and urologists for their advice and treatment options…but no one seemed to know what to do! I went on the internet and found GAIN (Gynaecology Awareness & Information Network) 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 dermatologist who said it was nerve related…and then 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. It felt like a million little paper cuts or broken glass sensation on the vulva, pain inside the vagina and rectal spasms (where it felt like a hot poker was being put up my backside). I couldn’t urinate properly, had bowel issues and suffered with PGAD (Persistant Genital Arousal Disorder).
Botox became my savior. 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. The injections were effective immediately and helped with my bladder and bowel dysfunction, but the physio at the time was telling me to use glass dilators although they just caused my vulval pain to ‘flare’. The botox 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 pudendal nerve entrapment (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 found myself having a ‘carpark consult’ with Prof Vancaillie who said 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 total relief from the pain I had been living with for years! I had PNE!
But the pain came back after the block. My quality of life was being affected to the point where I lived on the couch 24/7 in a morphine haze and the mum’s from the twins’ school were doing a meal roster for us. I also had to leave work. 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 contacted the ‘Patient Assistance Travel Scheme’ in my home state and they covered my flight and 2 week accommodation because it is law if a specialist can’t be found in your home state to carry out the surgery, then they have to fly you to the nearest city where there is a surgeon.
I was Prof Vancaillie’s 9th patient (1st from WA) and am now 4 ½ years post op. I have passed the 2 year healing mark (nerves take that long to heal) and know for sure I am about 60-70% better than I was before the surgery. Unfortunately because it took so long to get diagnosed, my nerves had defaulted to a chronic pain syndrome and just recently have been diagnosed with Fibromyalgia (widespread muscle and joint pain)…so my body aches 24/7 from head to toe. So even though my vulval/rectal pain has improved, I still suffer with muscle and nerve pain and continue to take medication for this. I take Neurontin (Gabapentin) 1800mg/day and Targin (Oxycodone/Naloxone) 20/10mg twice daily plus Endone (Oxycodone) 5mg for breakthrough pain daily plus many more meds for various medical conditions. I know some Doctors (and family members!) have an issue with me being on narcotic medication, but no one gave me a harder time than myself. It is the nurse in me…but I’ve realised that if I’m to have any quality of life then these medications are necessary and it allows me to function to be the mother I want to be to my 11 yr old twins. I’m under the care of a pain specialist so I only take what is prescribed and never more. The main point is that I have a life now. Before diagnosis I didn’t, so excuse me if I take that life with both hands and enjoy it!
I still consult a Women’s physiotherapist for physio on my tight pelvic floor and symptoms of pudendal neuralgia,I see a rehab physio to help with the muscle wastage I had with being bedridden for a year and not being able to sit for 2yrs and also take a gentle Yoga class for people with chronic pain…and either walk on my treadmill or walk my new puppy to keep mobile and help with pain relief.
Recently I’ve had to give up my nursing career (because of the residual pain I had to give up my registration as I hadn’t practiced for 5yrs ) so I’ve decided I can use my knowledge and skill base to help other women and educate health professionals about my journey with pelvic/vulval conditions. I co-facilitate a ‘Pelvic Pain Support Group’ at the Women’s Hospital in Perth (King Edward Memorial Hospital) under the banner of GAIN and have been asked to speak at various conferences/community talks to educate doctors/physiotherapists and nurses about this horrendous condition that is PNE.
I give love to my husband Brad for his patience during these hard times and for sticking by my side over the last 24 years. He continues to cook dinner every night, take the kids to after-school activities and keep our family on track all the while doting on me!
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.