Outpatient Hysteroscopy

Wednesday 28th June 2017
Kingston Hospital
Roehampton Wing

Today was attempt two of my 'clear out' hysteroscopy. I won't go into the reasons why the first one that was booked at the beginning of the month was cancelled, let's just say it was an misjudgement on my part. This was my first outpatient hysteroscopy so I had no idea what to expect or how uncomfortable it would be. I assumed as there were no offers of any sort of anaesthetic, it would be similar to experiencing sharp period pain or an HSG. Oh how wrong I was.

On arrival, a trainee doctor named Lisa greeted me and showed me to the consultation room where Miss Al-Shabibi was waiting. I later learned she is the lead in Outpatient Hysteroscopy at Kingston, I really wish I'd been privy to that information pre-op as it might've helped relax me a little! She explained everything that would happen and I signed the papers. I stripped and changed into the gown and followed the two lady doctors into theatre. Here, two more nurses were waiting for me and I felt very comfortable surrounded by a gaggle of women. Girl Power, or so I thought. Soon I had my legs resting in the stirrups, and liquid was injected into my cervix to widen it ready for the hysteroscope. I was comfortably chatting away to Lisa about work, my crappy commute, blah, blah, blah and then... a sharp stabbing pain so bad it took my breath away. I'm not exaggerating when I say it felt like she was jabbing me with a red hot poker. My chatter was soon replaced with yelps, cries and short, sharp breathing in between whimpers. I suddenly knew how it felt to be a Looney Tunes character, eyes on stalks and steam coming out of my ears, I certainly must have looked crazy! I was already holding (squeezing) Lisa's hand, now one of the other nurses quickly came round and offered her hand on my other side as she could see and hear my distress. As the hysteroscope was being inserted the pain was getting progressively worse. I was struggling to picture anything else apart from that torture tool.

Mrs A-S: "Look at the camera images, you can see one of your tubes"
Me: (Not looking and the screen) "Aaaaaaaargh"
Mrs A-S: "And there's your other one"
Me: (Turning to the screen for 2 seconds) "Aaaaaaaaaargh, how much longer?"
Mrs A-S: "Not long now, I'm just tidying up"

After what seemed like an eternity but in reality was only a few minutes, it was thankfully over. As soon as she pulled the Devil Device© out, there was almost instant relief, although some of the pain was still there, the pressure was greatly reduced. She seemed surprised at this which baffled me at the time.

After changing back into my skivvies, now with standard-issue hospital nappy pad, I was back in the consultation room. I found myself suddenly feeling embarrassed and started apologising profusely for being a baby. Maybe I was having a low-pain threshold day, or maybe it's due to my suspected adenomyosis or because I'm due on my period any day now? Whatever the reason, I did not feel good. I pride myself on how well I cope with most situations and now I felt like a failure. After trying to reassure me, Miss Al-Shabibi explained that she was extremely happy with how everything was looking, but she had removed a little more of the septum tissue that was left. There were no adhesions and it looked very clear which was a huge relief - no clearing of the cobwebs required. She told me she would report back to Mr Kalu and he would be in touch about the next step. And that was that, I was on my merry way, albeit walking like a rustling John Wayne. Stupidly and naively I hadn't taken any pain relief pre-op and I certainly needed it now, so I popped into the pharmacy on the way out. By the time I'd driven home, the Nurofen was kicking in and I felt a little more comfortable. Inevitably, as soon as I removed the ridiculously over-sized nappy, the floodgates opened. Bloody marvellous.

After settling on the sofa in my PJs for the evening, I started reading forums about women's experiences of having a hysteroscopy without anaesthesia. There's even a Facebook page called Campaign Against Painful Hysteroscopy! I found a vast spectrum of stories ranging from people who said it was merely uncomfortable to women whose procedure had to be abandoned because it was so painful and carried out at a later date under a general. Some women even said it was worse than childbirth! I felt a bit better knowing I was somewhere in the middle with my experience, I was just relieved it was over, I do not want to go through that again.

EVER!

11.04.18 - Update from Campaign Against Painful Hysteroscopy Facebook page

It's good to see Patient website being truthful about the risk of severe pain during outpatient hysteroscopy. We need ALL NHS gynae clinics to provide honest patient information leaflets warning of % risk of severe pain and giving the option of sedation or GA...

https://patient.info/health/hysteroscopy

Me: If you're about to have an outpatient hysteroscopy, I would advise you head to the Will it hurt? section and make sure you go through these points with your gynaecologist before the procedure. I can't stress enough, knowing what I know now, that if I was given the option of a GA I would accept it every time. At the very least they should be offering you sedation, please bear this in mind. That said, I have since spoken to ladies who have had no problems so don't take my experience as gospel, just be prepared.

Copper Coil

Yesterday, was another day of firsts. I ran my first ever Park Run and experienced my first ever coil removal sans anaesthetic - go me! The Park Run was a success, as in I completed the 3 mile course in less than half an hour, but unfortunately I was in pain the whole way round and suffered cramping for some time afterwards. Nevertheless, I felt a sense of achievement and the endorphins put me in a good mood for the day ahead, despite being overtaken by a man pushing a buggy (maybe more than one).

Later that day I had my final appointment with Mr Kalu before he was going to refer us for fertility treatment. We talked about our options and how he thinks referring us straight for IVF is our best chance given my age and the severity of the endometriosis. He said he would refer us as soon as I've had another hysteroscopy to have one final look inside my uterus to check for adhesions and a final clearing of any cobwebs. There is currently a three month waiting list at Kingston Hospital for IVF so all being well, I'll be able to start treatment at the end of the summer. Whilst, I'm not relishing the prospect of having yet another procedure, I'm looking forward to getting our fertility journey underway. After a few months of setbacks, things seem to be finally heading in the right direction.

Mr Kalu then informed me he was going to remove the dreaded coil. Gulp. Although this was my second IUD, I'd never been awake for insertion or extraction before so as I lay on the bed with my legs akimbo, I was a little tense to say the least. I could feel it scraping every millimetre of my cervix as he was pulling the wretched thing out, I can now see why women only have them every 5 years!

After a few minutes of chat while I was fumbling around for my underwear, which were of course tucked neatly under my leggings on the chair (I have no problem with a doctor studying my floodlit private parts but there's no way he's going to see my knickers), I asked to see the coil that he'd just removed. This is what he removed from the waste bin...

I'll just leave that there with you.

Hysteroscopy Recovery

This time round I was signed off for a week, initially this was two but managed to I negotiate Mr Kalu down - he looked at me as if I was crazy! I felt terrible for already taking so much time off from work this year and I didn't feel I would need more than a few days. The procedure was invasive, but the healing was all internal - no complications with stitches and dressings.

The day after the operation, my mood had improved and I started feeling more positive about the things. As with everything in life, crappy situations always seem heightened when you're lacking sleep and that night I managed to drift off very easily. I guess I was still trying to get my head around the diagnosis, what it meant for me and what other hurdles the future would throw in my path. As the week went on and I was feeling slightly more human, I had time to take stock and reassess what had happened over the last few months.

While I was recovering and trying to process and make sense of my newfound situation, I slowly started to feel frustrated and irritable. The internal pain was fairly short-lived but the emotional strain from bleeding heavily for two-thirds of the month before and after the operation started to get me down. I'll spare you from too many details this time but the post-op tampon embargo meant yet another trip to the M&S lingerie department, I was now getting quite a collection. My digestive system really struggled too, sometimes completely grinding to a halt for a few days then whirring back into action with accompanying cramps in every place imaginable, crippling stomach ache and bouts of nausea. The bloating was constant and I found wearing anything other than leggings unbearable. Ironically, I looked pregnant which was a twisted kick in the teeth, seeing as that's what I've been aiming to achieve for the past 3½ years. The resentment towards this disease and every GP who has misdiagnosed me over the past two decades is slowly augmenting as I understand more and more about bloody endometriosis.

Yesterday, I had my post-procedure follow-up with Mr Kalu. I explained my womb worriment and he vehemently reassured me the septum tissue hadn't grown back and will not ever grow back in the future (duh, it's fibrous tissue!). Although I felt a little stupid, I was hugely relieved. He was actually really happy with how the operation went and wants me to carry on with the oestrogen (HRT) and progestogen medication until I see him next month. ROLL. ON. MAY.

Hysteroscopy

Saturday 25th March 2017
BMI Coombe Wing
Kingston Hospital, London

Seven weeks on from my first procedure I was back on the same private ward ready for my second general anaesthetic and my second hysteroscopy. I felt so much more relaxed this time round, knowing there was no incision surgery and what to expect with the anaesthetic - I was almost looking forward to it! The only thing in the back of my mind was the trauma of the catheter after my last surgery - I was really hoping I wouldn't have to go through that experience EVER again.

Diverting from the subject momentarily as March is an important month for ladies worldwide. International Women's Day occurs annually on the 8th and what you probably don't know is that March is also Endometriosis Awareness Month. On the day of my second surgery there were marches happening in 47 countries globally to raise attention to this crippling condition. From Argentina to Kuwait to Zimbabwe - women (and men) were out in force! In London, along with the march, a few ladies met with MPs at Downing Street to discuss the issues surrounding misdiagnosis and unacceptable diagnosis times - hopefully this will lead to more awareness and guidelines for GPs. This would definitely be a few steps in the right direction.

Mr Kalu did his circulation of the ward early and informed me I was first on the theatre list once more. He explained that he was going to remove the coil and 'tidy up' any remaining tissue with the aid of a hysteroscope.

Now, I've looked online at what this involves and quite frankly the instrument scares the bejesus out of me. It's a thin(ish) metal rod with a camera on the end which relays images of ones uterus back to a monitor so the doctor or nurse can have a good ganders. I know it's not the first time I've had the pleasure of meeting this device, but for some reason the hysteroscope horrifies me, I was glad I was going to be knocked out for this procedure.

I find the experience of having a general anaesthetic an enjoyable but also a strange one. I don't remember the feeling of 'going under' for a few seconds beforehand - no countdown from 10 - just awake and then gone. I can only compare it to having a light in my brain that only flicks off, rather than a gradual dimmer switch.

I am relieved to say the the whole procedure, from going down for the general, to the operation felt a lot less traumatic and more straightforward. I'm assuming the anaesthetist gave me a much lower dose this time round as I was more keen to return to the land of living post-op. As soon as I was back in my room I was alert, sitting up chatting and I felt pretty good. My mouth was less dry and I had an appetite. An hour later I crashed.

Just before Mr Kalu did his afternoon rounds, I managed to pee. A lot. I was so happy I could've cried. Unfortunately my elation was short-lived.

Mr Kalu explained that he'd managed to remove more of the fibrous tissue but it was difficult to remove everything. He went on to explain that this would be the last time he'd carry out the procedure as he was concerned about creating scarring and adhesions which could add to my endo/adeno problems. He'd put in another copper coil to once again help with endometrial lining growth over the site. Wait, what? That wasn't part of the plan. I assumed this was all because the tissue had grown back and that this was always going to be a recurring problem. It definitely felt like one step forward, two steps back, this left me feeling extremely dejected and I struggled to fight back the tears in the car on the way home.

Diagnosis Letter

I realise this isn't very interesting or would even make much sense to many of you (I had to google every other word), but I thought I would post as it may be useful for fellow endometriosis sufferers.

Laparoscopic ablation of endometriosis, dye test, Hysteroscopy division of uterine septum and insertion of copper coil.

Findings:

1) Uterine Septum

2) Severe Endometriosis/Adenomyosis

Hysteroscopy: Her cervix and cervical canal were normal. The uterus is anteverted and bulky. There was a midline septum bisecting the cavity and extending to the midcavity. The utero-cervical length measured 8cm after division of the septum. Both tubal ostia were seen and are normal. Endometrial biopsy was sent for histology. The midline septum was divided using hysteroscopic scissors until both tubal ostia were visible and the cavity was more regular at the end of the procedure. The uterocervical length of 8cm. Procedure was uncomplicated.

Laparoscopy: There was severe endometriosis involving the rectum which was hitched up to the back of the cervix. There were significant wet endometriosis lesions on the serosal surface  of the uterus and on the right pelvic side wall peritoneum. The uterus was soft and adenomyotic in appearance. The right ovary was bulky and contains a haemorrhagic corpus luteum. The left was normal. Both fallopian tubes were freely mobile. There was prompt fill and spill of methylene blue dye from both tubes, confirming bilateral tubal patency. Her peritoneal endometriosis was ablated. The procedure was uncomplicated.

She was discharged home on analgesics and a stat dose of 1g Azithromycin. I have prescribed a course of oestrogen (Progynova 2mg bd) for 28 days to help endometrial regeneration over the area where the septum was divided and Provera 5mg tds from day 18 and for 10 days to induce a withdrawal bleed. The coil will be retrieved in 6 weeks during a second-look hysteroscopy to ensure there are no residual endometrial adhesions. A follow-up appointment has been arranged for post-op review.

Yours sincerely

Mr E Kalu

Consultant Gynaecologist 

Progress

After visiting my GP two years ago, I was referred for a pelvic ultrasound at St. Helier Hospital. I'd stopped taking the contraceptive pill 18 months previous with no success so we were keen to find out if there were any complications. The results of the ultrasound were fairly inconclusive, but I appeared to be ovulating which was encouraging.

Because nothing significant showed up on the ultrasound, I didn't return to my doctor for another 12 months. We'd moved house shortly after the last hospital appointment and it took time to settle into the new neighbourhood and change doctors, I guess we again just assumed we would conceive naturally during this time. What happened next changed all our lives forever - my father suddenly and unexpectedly passed away on 1st December 2015 from a massive heart attack. My world was completely turned upside down, I adored my daddy. For a few months, whilst I was going through the various horrific stages of grief, I couldn't even bear to think about children. It was too painful to comprehend that my Papa would now never meet his grandchild or that our son or daughter would grow up never knowing my lovely dad. On the other side of the coin, mum's deep sadness turned into longing for a little person to fill a small part of the colossal hole dad had left in our lives.

After a few very sad and challenging months, I booked an appointment at the new practice and went through my history with my new GP. She was really supportive and referred me to the gynaecology unit at Queen Mary's Hospital in Roehampton. I had my first appointment at the clinic in June of last year.

Two months later I had been booked in for a transvaginal pelvic scan and hysterosalpingogram - thankfully abbreviated to HSG. The first is an ultrasound which involves the insertion of a probe, enabling detailed images of the uterus and the ovaries to be obtained. The second is an x-ray using dye to determine if the fallopian tubes are open and to see if the uterus is a normal size and shape. I can only compare this to a lengthy smear test, it didn't hurt but it was assuredly uncomfortable. After these procedures I was given a mixed bag of good and bad news. The dye had travelled freely through my tubes which meant there were no blockages but my uterus appeared to be an abnormal shape. I had no idea what this meant and I wasn't given anymore information at the time.

During the follow-up appointment in October 2016 - my first meeting with Consultant Obstetrician & Gynaecologist, Mr Emmanuel Kalu - we talked about the results of the scan, the irregular shape of my uterus and the possibility that I could be suffering with endometriosis. And that was my first introduction to the condition. En-doh-mee-tree-oh-sis.

After studying the ultrasound and HSG results he tried to illustrate the possible semblance of my womb with a series of drawings. Doctor's scribbles are as bad as their handwriting so I've redrawn them for the purpose of my blog - I do like a good doodle. He suggested that he would be very surprised if the outcome wasn't option B or C.

Bog standard uterus

Arcurate uterus -  looks like a normal uterus, except it has a dip or a slight indentation at the top.

Septate uterus - the inside of the uterus is divided by a muscular or fibrous wall called the septum.

Mr Kalu advised I would need a further procedure called a laparoscopy to determine if I was suffering from endometriosis. It would also reveal which of the three illustrations resembled the shape of my uterus, which would be critical if we wanted to have children. He explained about the small incisions he would make in my belly button (wince) and abdomen and the possible surgery he would carry out if endometriosis was found. I felt confident and happy being under his wing. We discussed private health care as this is something I could claim through my insurance at work, he agreed this would be the most favourable option.

Of course I went home and googled endometriosis straight away. I read pages and pages about the condition. I was astounded to discover that 1 in 10 women suffer with it in varying degrees. If it's so common, why has it not been mentioned before by my GPs, considering my previous history?

My first laparoscopy was booked in for 10th December, six weeks after my appointment with Mr Kalu. Unfortunately I had to postpone the operation due to suffering with a chest infection the previous week, I was devastated. I had to wait eight weeks for another date - Saturday 4th February 2017.

Back(side) Story

24 years ago at the age of 13, I started a challenging and complicated relationship with puberty. The enemy? My menarche, Aunt Flo.

I soon became well acquainted with my monthly cycles, and as much as I tried, they were certainly something I couldn't ignore. I was terribly anaemic, my periods became heavier and more painful and I was soon taking a day off school most months, paralysed with sickness, curled and cramped up in bed with a hot water bottle. The shooting pains down my legs were just another factor to add to my suffering. I found the thought of having to go through this torture every four weeks for the next 40 years quite harrowing. Mum discouraged me from taking time away from education, but some days were so unbearable, I just couldn't face the trauma of having to deal with dysmenorrhoea at school. Mum was even convinced I had appendicitis until the pain was apparently cyclical. This abhorrent monthly gift was making me extremely miserable and affecting my quality of life but I just assumed this was a completely normal. I was a girl and I was stuck with it.

I've had many traumatic menstrual experiences over the years but a couple in particular will be rooted in my memory forever. The first was on holiday, our first family trip abroad to France in the summer of 1994. I wasn't feeling well but my parents convinced me to join them and my brother on the beach. I spent an hour in a foetal position in the shade but the cramps and the sweltering heat combined made it unbearable. Dad helped me to the car but I remember passing out with the pain on the beach before we got there. Back at the tent, I spent the rest of the day on a flimsy, foam mattress bed and distracted myself from the discomfort by tuning in to TMS on Radio 4 (we won the third test at The Oval to draw the series against South Africa). The avuncular voice of Aggers undoubtedly helped me through that day! There was a further incident on holiday a couple of years later where again my Dad (my hero) got up and escorted me to the toilet block in the early hours of the morning when I was doubled over with stomach cramps. After the pain had eased, we sat up watching the sunrise over the fields, both convinced we saw a black panther in the distance. I think he was probably humouring me though.

Another occasion, while I was in the first year at sixth form, I was due to sit a French Oral exam and Aunt Flo had decided to make an early appearance. Horrified, I had no choice but to put up with the pain and go through with the exam. I made sure I was prepared just before I went in but half way through (it was only half an hour), I realised The Great Flood Had Cometh. Never again would I wear light coloured jeans.

Shortly after that, Mum took me to the doctors and I was prescribed Microgynon® - a brand of contraceptive combined pill. It meant my periods were more regular, less heavy and most importantly, less painful. It was such a relief to finally find a way of managing my monthly nemesis.

The years went by, I graduated from university, worked a ski season in Les Deux Alpes, France (where I met my husband Jon) and moved to London. During this time, I had several abnormal smear tests and I was referred for a colposcopy and cone biopsy. This referral just happened to come half way through my stint as a seasonaire en France and my doctor advised it was best to have the procedure sooner rather than later. I'd survived most things thrown my way throughout those four months - even the gastroenteritis pandemic which swept through the whole resort and beyond - but I found myself in a hospital in Grenoble with a gynecologist who didn't speak a word of English. It was a pretty petrifying experience. Fortunately for me, my hotel manager who speaks fluent French, accompanied me to the hospital. Unfortunately for her, she had to listen to the whole thing from the other side of the curtain, squeals and all (thank you Caroline).

After the ski season, we moved to London and it was around this time I started to notice I was suffering more and more with bloating, pelvic and rectal cramps, constipation and other gruesomeness (I won't elaborate at this point). These symptoms were a great deal worse just before and during my period. To cut a long story short (the long version will be in the next post), I tried various different diets and finally got diagnosed with Irritable Bowel Syndrome - the collective condition doctors seem to bestow when they don't really know how else to diagnose it. I wasn't convinced but I lived with it.

At the age of 33, in September 2013, I chose to come off the pill after 17 years of continuous use. Jon and I decided that we would now just wait and see what nature would throw at us. Neither of us were desperate to have children right at that moment (we'd already been married for six years), but we had stopped using contraception for a reason - to get pregnant. I'd always suffered with jealousy when friends announced their joyous news, even when I was in my twenties and it was the last thing on my mind. I had these confusing, deep-rooted feelings that I was being left behind, I guess very similar to FOMO. Seeing our friends and the wonderful relationships they had with their children certainly made me think about being a mother a lot; I didn't want to get to 45 and regret the decision if we had decided not to become parents. I guess I just took it for granted that it would happen one day, as most people do.

Three and a half years later, it turns out Mother Nature isn't that great at throwing, not in our direction anyway.

October 2016, Queen Mary's Hospital, Roehampton. I get my referral for a laparoscopy with suspected endometriosis. Endo what?!