A Life with Endometriosis - Jude's Story
By Judith Perryn OAM
From the time that I started my period at the age of twelve I suffered from flooding for the first three days, clotting and pain. Friends with “normal” cycles, and later boyfriends, were unable to understand my reluctance to go on day trips where toilets weren’t close at hand. This was also a time before disposable products and you had to take a large cloth pad with you and take the soiled one home to wash which was embarrassing when still in primary school. I was put on the pill at 15 to help with the pain and to try to regulate my periods. I did not tolerate it well and seemed to have all the classic side effects so I stopped taking it.
Three months after my marriage in 1971 I was admitted to hospital with severe right-sided pain. My appendix was removed but pathology tests showed that it was normal. During the next few years I had numerous tests for gallbladder, kidney, bowel and stomach complaints. All tests came back negative and I was put on valium and I was told that I would have to put up with the pain, that it was normal for a female to have period pain.
I fell pregnant fairly easily in 1973, but had 9 full months of morning sickness. My son was overdue and ended up being delivered by emergency caesarean section. I had an elective cesarean in 1975 for my daughter’s birth after I started spotting and it was noted that the placenta was over the neck of the uterus. It was a huge surprise to be told that she was 7 weeks immature – it appears that I did not feed my babies enough during pregnancy. I have since heard that this can happen with endometriosis.
The pain & terrible periods returned and became worse over the next few years. Multiply trip to the hospital Emergency Dept. did not help and I spent a lot of time on the floor rolling in pain. The only option I felt I had was a hysterectomy (in 1979 it was believed to be a cure) which I had at age 28 in June ‘79. Endometriotic deposits were treated with diathermy & pathology results also showed adenomyosis. This was the first time that I remember hearing the words endometriosis and adenomyosis. A visit to the State Library in Brisbane resulted in us only finding scant details in a medical textbook.
But my life was fantastic – I could finally plan trips away with my family. No more dashes to take the children to kindy & pre-school and back before flooding occurred, and the most important aspect - no pain.
I had about 2 years of bliss then it started all over again. A visit to the Specialist in October ’81 for pain and vaginal bleeding revealed a small endometrioma in the vaginal vault. I was put on a course of Danazol and again I had all the side effects listed. One of the most difficult side effects for me, other than the weight gain, was that my character changed to the complete opposite. The hardest part was observing what I was doing but having absolutely no control. It was if I was observing someone else’s life. It was hard on my children as they were only 8 & 6 and suddenly they had a monster for a mother. Somehow my family and I made it through the 6 months treatment. The symptoms eased for the next 2 years but in November ’83 a small endometrioma was again found. I could not bare the thought of another course of danazol so I decided to try alternate therapies.
Our life proceeded around my pain until 1986, by then the pain made intercourse practically non-existent and the cyclic spotting was irritating. In June ’86 I made the decision to have my ovaries and fallopian tubes removed. They found some endometriosis and it was treated with diathermy. The pathology test reported “bilateral endometriotic cysts of the ovaries”. After surgery I was put on Premarin and again had all the side effects so it was changed to Obgyn and again the side effects made life miserable and after a while I stopped taking it.
By 1988 the severe pain had returned. I attended the inaugural support group meeting of the Queensland Endometriosis Association. The general meeting held in October ’88, when Dr Forbes spoke, was a turning point in my life - at that stage I had believed that I had something much more serious as no one had told me that endometriosis could re-occur after the ovaries were removed, but it was one of the points in Dr Forbes talk. Another trip to the Specialist and I was put on a 6 month course of a low dose of danazol. A laparoscopy in April ’89 showed that there was no active endometriosis.
I decided not to go on hormone replacement therapy and again used alternate therapies to cope with the symptoms of surgical menopause. I had a lot of pain on the right side and I found that after a course of deep tissue massage the pain ceased.
At the Association’s seminar in 1990 one of the presentations covered menopause and the effect that lack of hormones has on your long-term health. I had a bone density scan which showed that I was just in the danger level. After a long discussion with my husband and Dr Sheila O’Neil and because of a strong family history of heart attacks and strokes, I made the decision to commence having HRT implants. Horrors - I put on 10kg in 6 weeks. I persevered with the implants until 1993 and then went onto the trial for estrogen patches (not the best mode of treatment in the Qld heat) along with testosterone tablets. I later used an estrogen gel which I applied to my thigh or hip. It was perfect for me & I used it until 2008 when I ceased all hormone replacement therapy.
I have not had a recurrence of endometriosis symptoms and I have never regretted having the hysterectomy. It was the right decision for me. I was not happy with the weight gain from the HRT but I decided that the benefits out weighed the disadvantages and that I needed to look to my long-term health.
Life is a roller coaster. During the past 39 years I have also been diagnosed with fibromyalgia, melanoma, numerous BCC’s & SCC’s, an intolerance to Gluten & Lactose and allergy to salicylates. I have also had Nasal and Colon Polyps removed. Kidney stones, Surgery to remove pieces of a ruptured disc at L5/S1, Anterior & Posterior repairs and bladder taping. In June last year I had an atypical colourless melanoma removed from my leg. I also continue to struggle with losing weight.
When I was diagnosed with endometriosis we did not have computers, laptops, Ipads or mobile phones. Support calls were made on a tethered phone, newsletters were typed on a typewriter and sent by snail mail. Nobody had heard of Google, Instagram, Facetime, Zoom etc. I am pleased to say that a lot has happened in the world of endometriosis since then.
Seeing the advancement in the treatment of and research into endometriosis has been very heartening to me. It is also encouraging to see the cooperation between doctors, researchers and support groups. The options now available give girls & women the ability to make choices, in consultation with their medical practitioners, on the treatment regimes that best suit them.
International and National Support Groups and Researchers continue to collaborate. There is now a Parliamentary Friends for Endometriosis Awareness (PFEA) and the Australian Coalition for Endometriosis (ACE). A sizable amount of Federal money is soon to be forthcoming for education and research.
ACE meeting in Canberra
We would not be where we are today without modern technology, social media and the young women willing to speak out loudly on behalf of their Endo Sisters.
I feel very fortunate that I have got to this stage and been able to retain my love of life.
Endometriosis is not an easy illness to live with and I thank my family for sticking it out with me. I thank the many members of QENDO for the friendships that have been formed and the support given to me. QENDO turns 30 in August and has stayed true and strong in its commitment to giving support, education and assisting with research. QENDO is a family and I am proud to have been part of its life.
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