I haven’t posted on the blog for a few weeks, predominately because life has got a bit busier with me being back at work, although I have put in a bit of time trying to familiarise myself with how to run the blog. I’m still not entirely au fait with this, however I have had a helping hand from Hannah over at hanplans.co.uk and will continue experimenting. (I’ve created a ‘things that make me happy’ section but am yet to fill it with any blogs!)
When I started this blog I stated that it was partly due to keeping myself occupied whilst in hospital and that I’d do a post about my health and my admissions at some point down the line… Well I felt it was time to move on from sharing old pieces I’ve written to doing just that, although I have found this hard to write as it is what I am living right now.
Between mid-June and late July I was hospitalised 3 times, one of which was for surgery. It was a laparoscopy which is a keyhole surgery to access the abdomen. It is often done as an investigative surgery and cameras are used but it can become more invasive depending on what is found. If it is purely investigative it is counted as minor surgery and the expected recovery period is 1-2 weeks, however if more is required, such as incisions, separation of adhesions, excision or ablation (the burning or lasering away of tissue) it can be considered an intermediate surgery and the recovery can be up to 6 weeks. Unfortunately, I fell into the latter category, once they investigated they diagnosed stage 3, verging on stage 4, endometriosis, my ovaries were adhered together behind my womb by endometrial tissue, which had been suspected anyway from my previous ultrasound scan, and were separated during the surgery, other endometrial tissue was also removed, as was tissue which was the remains of a burst ‘chocolate cyst’, my Pouch of Douglas, which is the area between the reproductive and toileting organs, was partially obliterated with endometriosis and my fallopian tubes were both blocked and filled with fluid (there is suspicion it is also on other organs that weren’t looked at in the surgery). The understanding is that I will be unable to have any further children naturally due to this situation and IFV will probably be my only option if we decide we wish to add to our family biologically and obviously there are no guarantees with that. I’m now having gonadotrophin-releasing hormone (GnRH) analogues as monthly injections into my abdomen. These injections induce a fake and temporary menopause, complete with hormonal emotions, hot flushes and aches, plus a bruised swollen abdomen. I have more surgery in my future to look forward to as well.
It seems our last baby may have been a miracle and this diagnosis may have been easier to bare had that baby survived. One of the hardest things is being told I may not be able to be pregnant again but constantly having a bloated tummy and feeling like I look pregnant and like people may be wondering if I am pregnant. As my abdomen is so sore I have ceased wearing trousers or tights of late and therefore am mostly living in loose dresses, partly so my tummy is less visible, partly for comfort and partly to stop being so hot with the hot flushes. I will be literally boiling hot and hear a comment like ‘you know it’s not summer any more’ or ‘aren’t you cold?’ Yes, I do and no I’m not, my internal thermometer thinks I’m a radiator on full blast!
The Zoladex injection is a pretty big needle!
It has been a somewhat dramatic couple of months and the reason I am choosing to share this is to raise awareness of endometriosis, to make me feel less alone and to make sure if there’s anyone else who goes through this that they know they can contact me for support if they want to or need to. It is so isolating to feel like you’re going through these things alone and that isolation can lead to mental health problems, which is a big reason I try to be open and honest about issues I am contending with. I want to avoid feeling isolated myself and prevent others from feeling alone too. It sounds bizarre but, after all of this, I feel better for at least having some answers about what is going on with my body, they may not be the answers I’d ideally have wanted, but they’re answers nonetheless and there’s little worse than not knowing. Although I can’t pretend that I haven’t had a few anxiety attacks in these last few months.
So, what is endometriosis?
It is any, or all, of the below:
- Adhesions
- Bloating/swelling
- Back pain
- Cramps
- Sore breasts
- Abdominal pain
- Bowel pain
- Pain when urinating
- Cysts
- Infertility
- Repeated hospitalisations
- Repeated surgeries
- Skin flare ups
- Collapsing
- Headaches and/or migraines
- Insomnia due to pain
- Vaginal pain
- Pelvic pain
- Fatigue
- Issues with constipation and/or lose stools
- Bleeding
- Anaemia
- Variable emotions
- Hot flushes
- Joint aches
- Increased risk of miscarriage
- Increased risk of certain cancers
- Increased risk of certain infections
- Removal of reproductive organs
- Incurable
- The emotions that come with all the above
Some people may have more issues that occur due to their ‘endo’, as it is abbreviated to, although that makes it sound almost affectionate and I’m pretty sure there is not one single sufferer who feels any affection towards this disease. Generally, it is not considered fatal, however very rarely it has implanted on the heart, the lungs (leading to collapsed lungs) and even the brain, so it can be extremely serious and there also seems to be a moderately high rate of suicide attempts of patients who suffer from endometriosis.
It is not known what causes this disease, however there are several theories, some of which are, according to http://www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx :
- ‘genetics – the condition tends to run in families, and affects people of certain ethnic groups more than others
- retrograde menstruation – when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period
- a problem with the immune system (the body’s natural defence against illness and infection)
- endometrium cells spreading through the body in the bloodstream or lymphatic system (a series of tubes and glands that form part of the immune system)
But none of these theories fully explain why endometriosis occurs. It’s likely the condition is caused by a combination of different factors.’
It was ranked by The Guardian (http://www.independent.co.uk/life-style/physical-pain-most-excruciating-kidney-stones-cracked-ribs-gout-shingles-a7791606.html) as one of the worst pains a person can experience, worse than childbirth, and up there with pancreatitis, cancer, heart attack and broken bones. I consider myself to have a rather high pain threshold, I have survived pancreatitis, gone through childbirth without pain relief, have 6 tattoos and have danced and skied with broken toes, yet endometriosis pain can stop me in my tracks, leave me crying in a curled-up ball on the floor, make me wish there was ANYTHING I could do to make it stop. If you know anyone with endometriosis at any stage just please be aware of the level of pain they could potentially be in and understand if they ever need to abandon plans or are struggling.
I am ridiculously stubborn and have massive fear of missing out so rarely let my health stop me doing things, so if I ever bail on things the pain is extreme. People often ask how I keep smiling; well I have also had so many times in life I shoulda/woulda/coulda died (8 asthma attacks in a 5 week period in 2006, spun across 3 lanes on a wet M25 – somehow completely unscathed – in 2007, pancreatitis in 2008, 3 x haemorrhages in 2013, full blown anaphylaxis in 2013, 2014 and 2016 – when I put it on paper it looks crazy that I’m still here) so I have a real sense that I HAVE to live life to the fullest as much as I can and enjoy it and that I won’t let anything defeat me. I have also developed a good brave face so just because I seem OK it doesn’t mean I am, I imagine this is common of many people suffering chronic invisible illnesses.
When reading up on endometriosis I was shocked to discover how common it can be, with 1 in 10 women suffering, although at varying stages and with differing levels of pain and symptoms, so some women may be relatively OK with it, whilst others are enduring severe agony. Another astounding statistic I came across was that it takes an average of 7 years for a woman to get a diagnosis from when they become symptomatic. I now believe, as I look back on my life and history, that I have probably had this illness since my teenage years, just to a less debilitating degree, however it was since my pancreatitis in 2008 that the severe symptoms began, so I had 9 and a half years of daily pain before a diagnosis. My friend Kat said several years ago that my symptoms could be gynaecological so I had queried that with my gastro consultant but they said anything like that would have been picked up in scans I’d had, however scans don’t pick up endo, only adhesions, and I must not have had any at that point.
My mum also suspected endometriosis 18 months ago and I queried that at a GP appointment. I requested referral to gynaecology from that appointment and continually for a year until I finally got referred. If I had been referred when I first requested it I’d have had answers sooner, I may not have had the June admission, which was put down to a burst cyst, because the cyst would have been removed before it got that far, and I therefore wouldn’t have collapsed. My tubes would also may not have got to the severe state that they’re in and consequently fertility may not have been the problem for me that it is now. Endometriosis is notoriously hard to diagnose, partially due to having so many symptoms that overlap with other health issues and to some extent because it can only be confirmed through a laparoscopy and they don’t want to do surgery unless they feel it is entirely necessary. There are quite a lot of celebrities that have spoken out about endo, which can only be a good thing as it raises awareness of the disease. Some examples can be found here: http://www.huffingtonpost.com/entry/celebrities-with-endometriosis_us_56e1ba4ee4b065e2e3d51bca
One thing I find frustrating when reading up on endometriosis is the focus being so much on periods and period pain when the adhesions can cause daily pain, not solely when on your cycle, however it is worth reading up as much as possible. Another piece of advice I have to give is to find a support network, whether that’s turning to understanding friends and family, whether it’s counselling or group therapies or whether it’s by joining online groups, such as the Facebook groups ‘Endometriosis and Me’, ‘Endo Fight Club’ (see my t-shirt in the pictures) and ‘Nancy’s Nook Endometriosis Discussion and Education’ to talk to people who know what you are contending with, or all of the above.
Me, wishing I could kiss endo goodbye, wearing my Endo Fight Club #Endosister t-shirt!
For further information on this awful disease, The Metro has done a series of articles on endo including this one: http://metro.co.uk/2017/06/26/endometriosis-is-much-more-than-just-bad-period-pains-6732128/ (and you can find links to other Metro endo articles through it).
The Guardian have also done these pieces (and others):
The BBC have done this: http://www.bbc.co.uk/news/health-41159269?SThisFB
Other useful articles I have come across:
http://www.teenvogue.com/story/hysterectomies-for-endometriosis
https://www.ncbi.nlm.nih.gov/pubmed/21420910
https://www.mdlinx.com/obstetrics-gynecology/medical-news-article/2011/05/12/endometriosis/3589791/
https://ribbonrx.com/2016/12/03/how-to-support-a-loved-one-who-has-endometriosis/
http://www.larabriden.com/endometriosis-is-autoimmune/
http://www.endoempowered.com/20-symptoms-of-endometriosis/
All things Claireby 