"Endometriosis Care and Treatment."

About: Monklands District General Hospital / Gynaecology

(as the patient),

three and half years ago I was diagnosed with endometriosis. However, my experience of this disease started over 17 years ago. I began having heavy, extremely painful periods at age 14. They would last for 3 weeks, with one week break. As with most of the treatments for ‘women’s problems’ I was given hormones in the form of the contraceptive pill. After about two years, the mini pill I was on stopped working and I was bleeding through heavily again. So I was prescribed a combined contraceptive, which worked fantastically well. Over the years, I tried to come off the pill on doctor’s advice to see if things had ‘settled down’ only for my previous symptoms to come back with some added bonuses including violent mood swings, exhaustion, difficultly walking, pain in my hips and upper legs and bowel problems. As you can imagine, I stuck with this specific pill. However, when I chose to move abroad in 2010 I had to change on to another combined contraceptive as the one I had been using was not widely available there. The new pill did not work and I had constant bleeding, intense pain and increased bowel problems on top of the original symptoms. I managed to get a supply of the previous combined contraceptive pill when I returned home at Christmas that year, but it stopped working too after another 3 months.

When I returned to the UK things got progressively worse. I was referred for an ultrasound to check for PCOS. It was negative. My GP told me the only other possible condition that could cause all these symptoms was endometriosis. I had never heard of endo and was shocked by how many boxes my symptoms ‘ticked’ when I read up on it that night. I agreed to be referred for a laparoscopy at Monklands hospital in 2012, which diagnosed me with endometriosis and I was also fitted with a coil at the same time. When I was given my diagnosis I was alone, still groggy from the anaesthetic and was not given any details about what stage my endo was at or where it was by the surgeon (I later found out in 2015 it is on the ligaments attaching my womb to my back). The consultant who operated on me was moving, so my future appointments were scheduled with a different consultant who did not know my case. I also found out later that month that NICE had changed the endo guidelines before my surgery took place and that they advised all lesions be removed even during a diagnostic laparoscopy and a specialist bowel consultant should be present if it is found on or near the bowel. Neither of those things happened during my surgery.

The new doctor was rude and had very little time for me. They told me to hurry up and have a baby or get a hysterectomy. Hardly what you want to hear at 29. I made a complaint (that I heard nothing back on) and was re-referred by my GP. I have stuck with my new consultant for almost 2 years now, but it has been the same story every time I see them. I had one pain free period for 4 months, but it started to come every month and now it’s every fortnight. The coil hasn’t worked since it was put in, so I have had a 6 month chemical menopause and been tried on 3 different contraceptive pills. I have been complaining of IBS like symptoms for 6 months, but nothing has been done. Recently they said I should contact my GP regarding this to get an anti-spasmodic. It feels like throwing yet more pills at the problem rather than investigating it. I am worried the endometriosis has spread to my bowel and no one is taking me seriously. I have finally got them to agree to remove the coil which has made little impact on my symptoms. I have been refused an operation unless I am planning on having a child, which is infuriating as I do not want children and I feel my quality of life is suffering at the expense of some potential child. What is frustrating me right now is that every two weeks I have to take at least a day off work and take very powerful painkillers just to get through the day. I am constantly exhausted, bloated, in pain, aggressive and cannot function at work. I am scared I’m going to lose my job. I am made feel like I am being dramatic or over the top, but if it isn’t IBS and my endo has spread to my bowel and I end up with adhesions my quality of life and future reproductive health will suffer.

I think the NHS needs more endo specialists.

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Responses

Response from Eileen Clarke, Senior Nurse, Care of the Elderly, Monklands Hospital

picture of Eileen Clarke

Dear Estelio

I am so sorry to hear about your experience. I’d like to apologise that your health issues are not resolved and would welcome the opportunity to discuss these with you in more detail.

If you would like to meet with myself and a Consultant Gynaecologist, please contact me on 01698 366551 and I will arrange for a meeting to take place.

Thank you for taking the time to contact us on patient opinion, as all patient experiences can provide learning for staff.

Kind regards

Eileen

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