I am happy to forget the pain but I can never forget the heartache

Updated: May 23, 2020

I was a bit of late starter at 15 when it came to menstruation (same as my Mum). I can remember it ever so clearly. It was Melbourne Show Day 1967 and we had been on the Mad Mouse ride which was a very scary ride for any teenager and they all joked that the girls would “soil their pants” and that’s exactly what I thought had happened.

I had already been experiencing on and off severe pain for a couple of years with my Mum telling me it was ‘growing pains’. These pains kept continuing and increasing and I was simply told that was a woman’s lot in life and get used to it.

At aged 24 I had a suspected appendicitis attack and was rushed to hospital and had my appendix removed. The surgery took an exceptionally long time due to severe peritonitis and afterwards was told that whilst my appendix was all OK my “ovaries were leaking blood into the peritoneum cavity”. The General Surgeon called in a Gynae who “sprinkled antibiotic powder in the cavity”

I was placed on the Pill (so my mother immediately accused me of sleeping around) and things settled down, well the pain was not as severe.

My periods lasted 1 ½ days and I was told to get down on my knees and thank God instead of complaining about the pain. The pain was still relatively severe though tolerable for near 3 weeks of every month. When I did remind my Mum that the Doctors had said I may never have kids I was told that it was of no concern as I was not even married.

In 1980 I was married and by now the pain had spread to 28 days of every month with some relief coming when menstruation began.

Throughout 1981-82 I often thought I was pregnant but my period always put paid to that until Christmas 1982 I definitely knew I was. Nausea and bloating and a missed period said yes and confirmed by a Obs & Gynae recently returned from the UK who had been studying endometriosis (whatever that was!!!).

Then the day before New Year’s Eve excruciating pain and sudden bleeding told me something was dramatically wrong. D&C proved that I had been 10 weeks pregnant not 6 weeks. But he thought something wasn’t quite right and at a return visit decided to do a laparoscopy. I was then diagnosed with endometriosis. We didn’t have access to the internet at that time so I knew nothing.

The lap confirmed endo and from there came one of many many laparotomies to remove the endo and scar tissue. It was through my bowel and abdomen, around my kidneys and lungs and down around my bladder. The Gynae described it as severe and extensive and had seen few as severe.

The meds I was on made me ill and the pain still did not subside and I suffered from all the side effects of Danazol being the weight gain, extreme mood swings, hot flushes and I was on it for longer than desired in the hope that pregnancy would occur. His recommendation was not to talk with other support groups for fear of frightening others.

For the next 3 years I had more laparotomies and 2 bowel resections and was referred to the Epworth Hospital for urgent IVF. The IVF Dr did yet another lap and I can still remember him coming to my bedside after he had given the other girls in the rooms fairly positive news and loudly saying to me to face facts that I was never likely to get pregnant even with IVF but we would try. It was devastating news.

Living in Sunbury I was forced to travel daily to the Epworth in Richmond for bloods and hormone injections. Then came hospitalisation for a week for egg pick-up and then transfer. FAILURE

In 1985 I collapsed from extreme pain and was immediately booked in for a hysterectomy (5 years after I was married and only 33 years of age). I was assured that a hyster would resolve the issue. My wonderful Gynae came in and said that I would NEVER have had a pregnancy past 12 weeks as the endo was like a concrete block around the uterus and at the first moment the uterus began to expand the endo forced it to contract expelling the foetus.

It was expected that forced menopause would relieve all the pain and I could get back to living again. It was decided to go hormone free for 3 months by when the body would be re-aligned.

Sadly, the endo still remained and spread further. My oestrogen levels remained normal despite the hyster. Further bowel resections followed although I was by then on HRT and around 1993 things began to settle down and remained static.

Pain was a part of life throughout my body and then in 1998 I experienced extreme pain through my lower back and down my right leg. Given that by this stage I had herniated discs L4/5 and L5/S1 it was suspected that the multiple surgeries had resulted in pulling and cutting the muscles particularly the core muscles supporting the lower back.

Another laparoscopy to assess the problem failed due to the bowel having adhered to the anterior wall. A laparoscopy going through the ribcage to the lower right sciatic area was considered and agreed to however the scar tissue was the master and unfortunately I was to have yet another hospital stay of 9 ½ weeks and could have lost my life twice due to a punctured lung, perforated bowel and severed ureter. A Colorectal surgeon was summoned and further surgery to repair the damage was undertaken resulting in a R hemi colectomy I was then transferred to St Vincent’s Private Hospital where I was not expected to survive. A couple of weeks in and I developed a temp of 40+ and underwent further lifesaving surgery ……I was now slashed from boobs to pubes with a bag to boot.

Time passed and the wonderful medical staff ensured that I would survive. Due to the high temps I had an allergic reaction to a drug Gentamycin that saved my life after which I had lost my balance and hearing in one ear and very temporarily my speech and sight. I left hospital on a walking frame.

For the following 12 months I returned to hospital with small bowel obstructions approximately every month. These have now diminished to around every 16 months yet I am sentenced to a life of SBO’s (small bowel obstruction), chronic diarrhoea, an armful of meds and a very strict low fibre diet.

What else was I subjected to: 1. When told I would never bear children I was called a failure 2. Following my hyster I was told I was no long a real woman 3. My self-confidence was eroded over the next 12 years to be told I was not capable of anything 4. I was useless, who would want me etc etc

Today at 62, I still suffer from SBOs which require hospitalisation for 1 week, morphine, IV fluids, nasogastric tube and plenty of rest but life is good.

I can no longer work full time and walk with a stick most of the time.

I have now met a man who doesn’t care how battle scarred my body is and I have discovered sex is great.

I have acquired travel insurance and will take a well-deserved holiday to Ireland in 3 months.

My advice, live life to the fullest, life is too short and there is always someone out there who is worse off than you.

Endo is a life time disease for me and will probably be the death of me and I am happy to forget the pain but I can never forget the heartache.

#2015 #donate #womenshealth #endometriosisaustralia #health #chronicillness #emotions #hysterectomy #pain #endoeducation #bowelendometriosis #endoblog #depression #endometriosisawareness #endojourney #endometriosis #endosister #endoaust #endo #endowarrior #women #endometriosisblog

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