"Women's Health"

Approximately 8 years ago, after many years of irregular, painful, and heavy bleeding; tampons rejection; urinary frequency; and onset of sexual pain I was referred to the GP to a general Gynaecologist at Stobhill Hospital for further investigations. I was eventually told that I likely had endometriosis. I was advised to treat this hormonally with the combined contraceptive pill, as laproscopic surgery could lead to scar tissue and intensify symptoms. However, I was also told to seek referral back for this if symptoms intensified.

Fast forward a couple of years and my urinary frequency symptoms worsened with urgency, painful urination and pelvic/back pain which was always more intensified during my cycle. After ruling out recurrent UTI, I was referred to urology at Glasgow Royal Infirmary. I enquired if my symptoms could be related to endometriosis, and was told this was not likely. I asked for referral to gynaecology and was refused by both the GP and urologist. I had several negative urology investigations, and was eventually diagnosed with painful bladder syndrome through exclusion, and told to follow the IC diet.

In this time I had also been admitted to hospital (by the GP) for pyelonephritis which was escalated by a surgical team as suspected kidney stones (I had neither), leading to a CT scan which identified a rectal polyp. This was subsequently removed in a sigmoidoscopy at Stobhill Hospital and then followed up by a full colonoscopy, both of which were very comfortable and went smoothly and efficiently.

Last year, in a very long overdue urology follow up (2 years) I was advised by the urologist to try Betmiga. My urgency symptoms improved, and as such urology tried to sign me off from their care, stating they could have misdiagnosed me, as Betmiga would not have been expected to improve symptoms, and that they would never have my pain or other symptoms under control. I refused to accept this, but my next follow up appointment was booked for a further year away.

Around 18 months ago my daily habits changed, my stools became permanently sticky and unformed, and I had three acute episodes of severe diarrhoea and vomiting over a period of six months. Again these symptoms were intensified by my cycle. Aside from this I suffer continued chronic pelvic/back pain, continual bladder flare ups, heavy bleeding, breakthrough bleeding, and menstrual migraines.

I brought all of this up to my GP stating I knew my bowel problems sounded like IBS, but that I had concerns about the involvement of my periods, and a general deterioration in my overall health including fatigue, lethargy, light-headedness and pins and needles. The GP dismissed my concerns about my cyclic symptoms, telling me that I had painful periods not endometriosis. He did however agree that IBS may be likely. He ordered a calprotectin and routine bloods for blood count, thyroid, electrolytes, liver function and glucose. These were all normal and no follow up was provided.

A while later, I returned to the GP, and saw a trainee. I complained my symptoms were far from resolved, my pain was chronic and impacting my life, and that I was experiencing new pains. They agreed the issue was complex and could involve gynaecology, colorectal and urology issues, but after consultation with a more senior colleague, also ruled out endometriosis as an issue. They said, as I was under urological care, there was little they could advise here, however, was concerned about my bowel health.

At this point I noticed my previous test results, and my calprotectin was actually raised, and should have warranted a repeat so I requested a repeat test as well as Qfit and microbiology stool tests. My calprotectin subsequently came back raised and I was given an urgent referral for colonoscopy in September at the Golden Jubilee Hospital. The procedure, unlike my last, was extremely painful. I was advised mild inflammation was present in the terminal ileum, but IBS likely so to follow FODMAP diet. I had 11 biopsies, of which the seven from the terminal ileum were shown to have mild to moderate inflammation as an equivocal result.

After another intense flare up, I contacted the GP. I shared concerns about pain management, my cycle, and mental health. The FODMAP diet and IC diet were contradictory in many respects, and I needed help with this. I was rudely told I was at the specialists, and that there was nothing the GP could do as they are the middle man. I requested pain killers, and changed my contraceptive pill to a lower oestrogen in an attempt to gain some control of my symptoms. I also began to make significant dietary changes through my own research. However, after a couple of months my symptoms flared up, and my pain was so severe I could not walk. 

I contacted the GP again, this time requesting the trainee GP. I explained that I was convinced my symptoms were gynaecological in nature. They finally agreed to give me a referral, but advised a wait of over a year. They told me I had also been referred to the IBD team for MRI and small bowel studies after my colonoscopy, which I had not known. I am still awaiting these investigations.

I have since privately seen a Endometriosis Specialist, and been advised I have all of the classic symptoms of deep invasive Endometriosis. My pill was changed to Cerell and I was prescribed Dienogest whilst I awaited further investigations (still ongoing). I have began to feel slightly better after only a month of this treatment.

I am disgusted at the attitudes I have faced throughout my care. I am appalled. I had to pay privately to get the diagnosis I required, after I was told I had this condition 8 years ago. Despite this I was still not believed and continually told I had painful periods, resulting in a significant impact to my quality of life and wasted investigations.