My pelvic pain story: still on the journe... - Endometriosis UK

Endometriosis UK

54,515 members43,916 posts

My pelvic pain story: still on the journey to a diagnosis and feeling discouraged

Misoramen
Misoramen

I am 30 years old and I’ve been experiencing severe pelvic pain almost since I began menstruating 17 years ago. Prescription NSAIDs, first doled out to me some time in my mid-teens, have outlasted more than one romantic relationship and several friendships as a constant presence in my life. By 19, mefenamic acid and paracetamol combined were not enough. On one memorable occasion, I spent most of a day on a camping holiday writhing, crying and sweating on a fold-out mattress as a twisting, dark pain seized my lower abdomen in cruel waves over and over, and my then-boyfriend (now husband) looked on helpless and not a little disturbed. I’ve been on the pill pretty much ever since then, experimenting on occasion with different varieties, or anti-spasmodics to ease the digestive cramping and intestinal issues that so often accompanied the period cramps.

I’ve lived in five cities and been in the care of many different GP surgeries: a succession of doctors of all genders who gave me a minute, maybe two, to speak, to explain that yes, I need these medications to function normally, before signing a script and sending me on my way.

I took a couple of breaks. Once was when one GP refused to repeat my usual prescription, and the pill they put me on instead gave me horrendous withdrawal headaches and allowed the cystic acne (that had reared its head for me at age 20 before being seen off by my chosen pill), to return, to my great distress. I later discovered that my previous pill was more expensive than others, and my surgery were apparently under instruction to systematically remove it from patients in their practice. I had to beg to be prescribed it again. The second time was when, in a fit of optimism, I wanted to see if my unmedicated self really felt as awful as I remembered years ago. Less than one month later, in so much agony that I spent the night alternating between vomiting and diarrhea in the shared bathroom of my HMO, I realised that it was actually worse than I had ever remembered. That was five years ago.

The most recent development in my pelvic pain came the same year as the first vomiting incident: at first, so fleeting and intermittent that I gaslit myself afterwards that it had actually happened. Out of the blue, a sharp stabbing pain struck the softness just inside my right hip bone. Different to the drawn-out waves of uterine twisting I was used to, this felt like a spike driven into my sensitive lower-right abdomen. It took my breath away in its intensity and forced me to stifle a cry or quickly find a place to sit down on more than one occasion… in a department store, on a bus, in a yoga class. Then, just as quickly as it had come, it would go again in less than 20 seconds, leaving me wondering if I was altogether sane. My abdomen began to feel vulnerable and sensitive more and more regularly, with the deep stabbing attacks happening randomly every few months. I guarded my tender abdomen carefully, not allowing even my partner to touch it. I mentioned the random pains to a couple of GPs. One of them sent me for an ultrasound which was conducted externally (later I discovered an internal one might have been more appropriate) and found nothing, leaving me doubting myself even more.

It took until two and a half years ago for a new female GP who picked up my repeat prescription request to call me one day and tell me that it wasn’t normal to need prescription NSAIDs AND the pill at the same time. I was stunned. Returning to my native Northern Ireland aged 28, another male GP informed me that, now that I was married, I should think about a referral to investigate the causes of my pelvic pain, my acne… because PCOS or endometriosis (if that’s what it was) might affect my fertility, and I should talk to my husband if we were planning to have children. The earlier he referred me, he explained, the better, because the state of gynaecological care in Northern Ireland meant that it may take years for me to be seen, and had I considered my biological clock? I left the appointment partly relieved at finally being taken seriously, but upset and angry that no GP had bothered to take things further before without the imminent idea of my reproducing… as if my pain on its own was something to be ignored and endured, and only now investigated for the sake of a hypothetical pregnancy.

I waited a year following my referral before I had a scheduled telephone call with an endometriosis nurse. In the interim, I began to experience occasional bleeding and pain passing stools during my period. The nurse agreed that yes, my symptoms sounded like they warranted further investigation, and that the consultant gynaecologist would be in touch. My follow up call with the consultant came almost another year later, by this time in the summer between wave one and two of the Covid-19 pandemic. I was on the phone with him for less than five minutes, and a few months later, another unexpected call invited me to hurry to Belfast City Hospital because an MRI slot had just opened up due to a cancellation that day, and I had less than an hour to claim it. That afternoon in September 2020 I finally got an MRI. I waited a month, two months, for my results. I moved house and called the hospital to inform them of my new address. Still nothing came. Concerned, I called to chase, only to discover that my results had fallen down an administrative hole somewhere when the consultant who referred me had left the health trust. I’m still chasing my results five months after my MRI.

I don’t doubt myself or my symptoms as much as I used to. The intermittent stabbing in my lower-right abdomen still comes on occasion, but now a bloating pressure in the same area and extreme tenderness are with me almost every day. I continue to take my pill and painkillers for the period pain, apply hot water bottles to my stomach, legs, lower back, take deep breaths. I’m just about able to get on with my day, a dull cramping pain threatening me vaguely from underneath my medication as my lower right abdomen twinges come and go. I call the hospital gynaecology department intermittently. I don’t want to make demands of an already stretched NHS during a pandemic, but I’m worried that something is wrong that will get worse over time, with consequences as yet un-reckoned with. After learning more about endometriosis and reading other women’s stories, I try not to let my thoughts be consumed with the idea of ruptured cysts, of my ovary twisting and suffocating unexpectedly, having to rush to hospital. I get annoyed with myself for thinking something so dramatic. I often feel helpless, not knowing if or when anyone will get back to me, and worrying equally that when they do I’ll be told nothing is wrong with me at all.

2 Replies

I think you are doing best you can to get the support you need. You are not doing anything wrong. I was the same, I really don’t like to bother GP or 111. And until really bad, I didn’t contact them but I had to think of loved ones and that was my sons and I really knew something wrong with my body and where so at that time, I didn’t give up. I’m a foreigner here and often feel so awkward to seek for help. If I was in Japan, I have to pay for the bed I’m laying down. So I’m grateful to have the support I need but I feel bad at the same time. But I know that it’s only me who can do this. And same for you. You know your body. You are the only one who can do it. So I know sometimes it’s really tiring dealing with it especially when you are feeling so weak by pains and all sorts but please don’t give up till you’ll get what you need. Sorry, I can’t give you much advices because of I don’t have much knowledge. But I hope you’ll meet the right person to give you the right help that you need. Finger cross and Hugs xx

It's good you're letting it all out here I took the time to post my story last year whilst struggling to conceive I did a lot of research of my own as docs were useless I now have a three week old little girl I didn't have surgery nor did I get support from g .p but sought confirmation from a specialist privately

You may also like...