Stacey A.S
From the age of 13 years old, I suffered with very heavy and extremely painful periods. On many occasions, I was not able to go to school and had to stay in bed. I had numerous GP appointments but was told the pain was normal and was prescribed Ponstan which is for mild period pains. When I was 17 years old, I realized what I was experiencing was not normal - I began having severe labour-like pains and hot and cold sweats. I sometimes passed out, vomited and at times had to crawl around on the floor just to get around as the pain was so severe. The abdominal pain could come on very suddenly.
My stomach was swollen which made me look pregnant - I found this very embarrassing and distressing. Others would make comments and ask how far along in my pregnancy was I? I was aged 15 (a virgin). Friends had to phone my dad to ask him to come in the car to collect me. I actually thought I was going to die. I continued to go to my GP,but the only suggestion was to start taking the contraceptive pill which I was told would help with the extreme pain, bloating and heavy bleeding but it never did.
I tried everything, hormonal and non-hormonal treatments, but nothing worked – in fact they made the bleeding worse. I was checked regularly for Sexually Transmitted Infections and Sexually Transmitted Diseases – the tests were always negative. I had numerous pregnancy tests as medical staff considered I could be miscarrying - I knew this was never the case.
I was persuaded to have a contraceptive implant (a rod implanted under the skin of my upper arm) as I was told this would certainly help. It didn’t, I bled constantly for the 3 months I had it. I wanted it removed, but staff refused until I said that if they did not remove it, I would rip it out myself.
For the next 4 years, I tried to get a referral to gynecology so I could be properly investigated – I had never had any proper investigations (only a number of internal examinations and I was always told everything was fine). It was a constant battle and a fight to get anyone to listen.
When I was 22 years old, I had my first gynecology appointmentand it was agreed to carry out some investigations – a transvaginal ultrasound scan, a hyteroscopy, hysterosalpingogram – none of which showed anything except a heart shaped bicornuate uterus. It was then agreed to carry out a laparoscopy which found widespread adhesions and fibroids. I asked why the adhesions and fibroids had not been removed during the laparoscopy and was told that they would not cause my severe symptoms and it was better to leave them alone. I was furious and for the next 2 years fought to have them removed.
When I was 24 years old, I had another laparoscopy to remove the fibroids and adhesions. After the surgery I was told that I had widespread, deeply infiltrative endometriosis. I didn’t know what endometriosis was and I was told it was nothing to worry about. I asked if endometriosis should be there and I was told no. I became agitated and asked why it had not been removed - I also felt that if the fibroids and adhesions had been removed 2 years before, the endometriosis would have been found then. Medical staff said the equipment necessary to remove endometriosis was not available in that hospital but that I could have it done privately. It’s always about money – I could hardly keep a job because of the effects of endometriosis. What I didn’t know then was that endometriosis could be treated and removed by laparoscopy – the surgery I had just had.
I was prescribed Decapeptyl injections but was not told that although this induced a chemical menopause, I still needed to use contraception as it was still possible to become pregnant. If I became pregnant there was a risk that the baby would be born with no limbs. Also,I was not prescribed hormone replacement therapy while having Decapeptylinjections to prevent horrific side effects – mood swings, hot flushes, night sweats etc. It was only when I experienced these side effects and did some online research that I discovered this. Without HRT Decapeptyl had a terrible effect on me – I felt I was going mad. I was like a woman possessed, angry, argumentative, making others cry – this was totally out of character for me. I understand Decapeptyl remains in your system for 6 months and when I stopped the injections, I suffered panic attacks and felt as though I was having a heart attack (rapid heart rate and palpitations). Thankfully despite not using contraception, I did not become pregnant.
By the time I was 26 years old I was still trying to have the endometriosis removed but doctors were still refusing to do this. I was referred for IVF despite the fact it was unlikely to be successful due to extent of the endometriosis. I was set up to fail, I was struggling physically, mentally, socially and by this point I had no career or friends. I now had anger issues, depression and worsening endometriosis – it was destroying my life. I now experienced severe pain on an almost daily basis.
Between the ages of 26 and 27 years old, I had IVF treatment. I was told to give up smoking but got no help with this. The first IVF procedure had to be postponed as I developed a clot in my womb. In preparation for IVF I had to give myself injections to decrease my egg production (apparently, I produce too many eggs). Of the 6 eggs that were harvested, only 4 were viable and only 2 actually fertilised. However, I received a phone call to say that neither of the 2 fertilized eggs had made it past stage 3 and it was highly unlikely they would progress further overnight. I was asked,very insensitively, whether I wanted them to be discarded into the bin or kept overnight. Although I was assured nothing would change overnight, I said I wanted to wait. I was called the next day and told there had been no change, so they were discarded into the bin as if they were nothing. I immediately started smoking again and my depression worsened - I felt hopeless.
I understand now that even if my eggs had been implanted into me, it would have been pointless as endometriosis affects egg quality, prevents implantation, and even if it does implant it may not make it very far on anyway as endometriosis is a hostile environment. This whole process was pointless and affected me very badly emotionally and mentally – the professionals involved knew it was not going to work so why would they put anyone through this?
The IVF team were keen to discuss a 2nd attempt however because of my declining mental health I did not want this. I felt I could barely look after myself, therefore what good would I be to a child, so I refused. I was in so much pain – everywhere – spine, pelvis, stomach, anus, vagina, ovaries, thighs and legs - I was at the point where I could no longer function. I spent most of the time in bed crying, screaming, swearing – I used hot water bottles, took scalding hot baths, electric heat pads, heat sprays, freeze sprays, but nothing helped. I could not look after my home either. My life had broken down in every way – I felt inadequate as I could not have children. This affected me more when I was with others who could have children; baby scan photos, conversations about fertility and motherhood were unpleasant. I couldn’t tell what my mood was going to be like from one day to the next and I would eventually after keeping quiet about my feelings for so long start to express them no matter what or to who. I was considered rude, but I’m not actually rude, I was just being truthful. I had experienced years of not being respected or treated sensitively so I responded in the very same way towards others.
I continued to be very angry about the neglect I had suffered from medical professionals and the permanent damage the endometriosis has caused me physically. I decided to go along to my local endometriosis support group, but I only went a few times - I was the only person there who did not have children. Additionally, most other members, unlike me, had undergone surgery to remove endometriosis (and they did not seem to have had any problems getting this done). I realised these support groups were not for everyone and definitely not for me – in fact I received some derogatory comments despite other members knowing my situation. I did however get some useful information for example how to get a referral to another health board to see specialists. I spoke to my GP who referred me to a specialist, and I waited in the hope that I would get the help and treatment I needed.
In November 2016 at the age of 28 I had ureteric stents inserted in preparation for a laparoscopy. After the surgery, I initially felt fine, however I started to suffer excruciating pain - I was not given any pain relief and as no infection or other reason could be found for the cause of the pain I was sent home. (I vomited constantly during the journey home) I was told that there would be blood in my urine for a few days, but this continued for months. The constant pain also continued, and I was very lethargic.
I was due to have the laparoscopy in December 2016 however my period started, and I had been told that if I had my period, the laparoscopy would not be done. However, due to the length of time I had waited a decision was made to go ahead with the surgery. I was also told also they had found signs of infection the source of which was the ureteric stents.
I had the 1st laparoscopy in December 2015 and despite being told that if any endometriosis was found it would be removed, it was not. I was told the disease was so bad it required a team of specialists to carry out the surgery. I was very angry and once again felt I had been neglected and badly let down by medical professionals. So, the 2nd laparoscopy was done December 2016 but I had to have stents inserted beforehand in November 2016.
Immediately following the surgery December 2016, I actually felt the best I had felt all my life, but I now know it was only the effect of the morphine. As I felt so good, I asked to go home but they were reluctant and advised I stay at least 3 days. I felt fine - I insisted they remove the catheter and everything else and to get me a discharge sheet. (I had forgotten all about the prior infection and that I had not been given any antibiotics) I was just exhilarated that for once I did not feel horrific pain. I was discharged home that night and I still felt great the following day. However, the day after that I experienced horrific pain which went on for months. I lost weight, drifted in and out of consciousness, was unable to get up and barely able to eat. My family contacted the doctor numerous times and finally the doctor came out to see me and prescribed morphine. He told my family there had difficulty inserting even the smallest stent and it had not been possible to get one in – I would later find out this was not the case - both were in and had to be “rammed in”.
In March 2017, I received phone messages from my GP asking me to attend the surgery immediately, but after 5 months of trying to persuade them that something was wrong I was actually beginning to feel better so did not want to waste my time. I did go to the surgery though, and staff took my blood pressure and immediately called an ambulance as they considered I was going to have a heart attack. They took me to hospital where I was weighed, and I was asked if I was anorexic as I was under 6 stone in weight. I had various investigations including a CT scan of the abdomen with pelvis contrast. The tests showed that I was hypotensive, pyrexial and tachycardic, I had pyelonephritis, hydronephrosis (despite inserted stents), sepsis and I was hypothermic. I had to have regular injections to stop blood clots forming to prevent the need for amputation, regular intravenous fluids and intravenous antibiotics as well as regular ECGs and blood pressure checks. I remained in hospital for a week and was told I was one day away from death.
I was discharged home on antibiotics and was referred to a dietician for supplement drinks (it was actually over a year until I was seen by a dietician). I suffered with insomnia and had extreme kidney pain, urinary urgency and stress incontinence. The urinary problems only started after the stents were inserted and I believed they would be resolved when they were removed. In April 2017 at the age of 29 years the stents were finally removed, but nothing changed. I have been prescribed antibiotics on a long-term basis to prevent recurring kidney infections and to prevent sepsis.
Meanwhile my endometriosis remained but my appointments with specialists were all cancelled with no explanation. I had to attend my GP regularly to ask to be re-referred to the specialists. I was and remain very concerned about the lack of monitoring of my kidney function.
Finally in 2018, I was given an appointment which was not cancelled and at this appointment, it was agreed that I would be put on a 12 week waiting list for a laparotomy - I was told it would be a much larger incision so the specialist would be able to get a better look inside to understand the full extent of the disease. I was also given laparotomy information sheets explaining why I was having this surgery rather than a laparoscopy procedure. Shortly after this I received a letter stating I had exceeded the waiting list times and to call them. I did and they explained I would have to wait another year but would definitely have the surgery in the summer of 2019. I did not have surgery in 2019 and then in March 2020, the country went into lockdown because of the Covid-19 pandemic. I called again to be told I would definitely have surgery in the summer of 2020.
In 2021- my GP wrote again but still no date for surgery. In December 2022, I got a call from the hospital to let me know there was a date for surgery – a laparoscopy. However, this was not the surgery I was waiting for – I was to have a laparotomy. In January 2023, I received another phone call from the hospital letting me know I was at the top of the waiting list and a telephone appointment had been made for me to speak to a gynecologist. I questioned the reason for the telephone appointment and once again questioned the surgery I was to undergo. I asked that the telephone appointment with a gynecologist be cancelled. I submitted a complaint and a request for a copy of my medical files. During a phone consultation with the Consultant he denied he had ever said I was to have a laparotomy despite the fact that someone was with me during the appointment.
When I did receive a copy of my notes, much of the information was redacted, however I had a copy of my medical notes from some years before with no redactions and the information was there. My notes had been doctored – for example they said I had been prescribed antibiotics – I wasn’t, they said I refused surgery in 2018 – I did not, they said the date I was put on waiting list was 2021 – it was actually 2018.
I do not want another laparoscopy as the one I had in 2016 did not relieve my pain. The Consultant has suggested I transfer to another health board as there is no trust left between me and the team. Moving to the Greater Glasgow & Clyde Health Board is not an option as it would mean 4 hours of travelling which I cannot tolerate due to pain and nausea not to mention the cost of fuel. Following my complaint, they advised I could contact the SPSO. I was offered a laparoscopy on 25th February 2023 which I had to refuse due to personal reasons.
I underwent a laparoscopy on 15th March 2023 to remove widespread Endometriosis again. It was also noted my womb was weak (did not find this out till report was sent out month or so later) I was supposed to receive a call the week later for follow up but the week after no call came.
“Endometriosis – A legacy no Auntie wants to leave her nieces”
Endometriosis is negatively life impacting – Endometriosis has caused me :
Impact on education, career & finances
To lose / breakdown of friendships / relationships (Due to infertility stuck while others move on & pain & social impact)
Depression
Self isolation & loneliness (no one understands)
Aggorophobia
Affects mentally, physically, socially & emotionally
Infertility & psychological impacts
Long term anger issues (medical neglect, gas lighting, insensitivity’s towards infertility)
