We love how brave women can be in sharing their stories. But we also care about privacy, so we’ve changed the name of our brave endowarrior to protect her privacy.
Background
Jacinda* works in Movement and Choreography as a specialist in theatre. Jacinda is has postgraduate qualifications in her field and works with a full spectrum of stage productions. She was diagnosed with endometriosis in 2019, and kindly agreed to be interviewed by Marilyn about all things endo and is impact on her life.
It’s a fascinating read, to please persevere, you won’t regret it!
Thank you must for agreeing to this interview, Jacinda! Can you start by telling me about your first experiences of endometriosis and your journey towards diagnosis?
No problem! It’s my pleasure, this is really important to me. There is so much misinformation out there and I’d love to help others out if I can. It’s a long story, so here goes!
My journey to diagnosis was like most: long and arduous. I’ve had issues with my period since my teenage years (I am 26 now), and I had been to-and-from Doctors’ surgeries several times during my life about gynaecological problems, without them ever being investigated further. For example, during university, I’d had about a month’s worth of pelvic pain that centred around an ovary. After being referred for an ultrasound, they didn’t find anything, assumed it had been a cyst that had popped, and sent me on my way.
Shortly after university, my periods took a turn for the worse, getting even heavier (I was already a heavy bleeder), more painful, with extra PMS symptoms, and with an increase of clots in the blood flow. I was completely dismissed by doctors (not the first time, far from it) and was told that periods just change naturally when we grow up. I was sure something else was wrong, but I didn’t know where to turn.
In autumn 2018 I had a sudden onset of agonising pelvic pain. Convinced I had a bad UTI, I was tested negative at a sexual health clinic and sent away with no help. It wasn’t until I moved to London and met my new GP (who is the best doctor I’ve ever seen) that I finally got the referral to a gynaecologist. In their investigations, an ultrasound scan revealed a large endometrioma – an endometriosis cyst, or ‘chocolate’ cyst, a cyst filled with blood. This meant I was able to be put forward for laparoscopy surgery for formal diagnosis and removal.
It’s important for me to mention here that endometriosis is not usually diagnosed via ultrasound as it does not show up, other than in cyst-form or other obvious protrusions. Therefore, the only effective way to diagnose is through laparoscopy, but a lot of the time these are deemed ‘unnecessary’ if no endometriosis is found.
A lot of pelvic sufferers have to fight to get this surgery, so I was lucky.
6 months after this appointment, and 9 months since the onset of the intense pain, I started to feel impatient. Extra-strong painkillers were barely touching the pain, and I was miserable every day. I even considered going private, but that would have cost anything from £5,000 upwards, and I don’t have that kind of money. So I chased it up. First call was the gynaecology department, who were less than helpful. I asked to be put on a cancellation list for last minute surgery dates, but such a list didn’t seem to exist at my hospital. Next step was seeing my GP again, who saw how much pain I was in and wrote to the hospital asking for me to be made a priority – to be bumped up the waiting list. I heard nothing for a month. I contacted the gynaecology department again, but apparently they hadn’t received the letter.
I was distraught. I ended up writing a long, emotional, email to both my GP and the hospital’s PALS department (Patient Advice and Liaison Service). I included how long I’d been waiting, my low quality of life, and also my research into the NICE guidelines – about the potential dangerous risks of a large endometrioma and how excision surgery should be used rather than ablation. I hadn’t been guaranteed what technique the surgeon would use, but excision surgery is the ‘gold standard’ – it is seen as the most effective technique to hopefully remove the patches of endometriosis in its entirety, from the ‘root’, rather than burning away and leaving some of it behind. I also wrote how I should have been offered an endometriosis specialist surgeon rather than a general gynaecologist (not all gynaecologists would have the expert skill to remove it without damaging my ovary, or be able to spot certain patches of endometriosis elsewhere if they hadn’t studied it intensely or carried out enough surgeries).
After some more waiting in limbo, I finally got the call. After my hard work and relentlessness, I was told my surgery would be in one month’s time, and would be carried out by one of their endometriosis specialists. I am so proud of myself for taking a stand and not letting my health be played about with anymore. The surgery was tough on me – I had a reaction to the general anaesthetic (which involved a LOT of vomiting…) and I took a long time to heal, but the surgeon had successfully removed my endometrioma, found more endometriosis in my pelvis (surprise, surprise) and removed that too.
Oh my gosh, that sounds horrendous and unnecessarily traumatic! Were you offered continuing support or treatment after your surgery?
Well, I had the mirena coil inserted during surgery; it was my choice although I felt I was pressured into it by the gynaecologists I saw over the time before my surgery took place. They assured me that a hormonal contraceptive would suppress further endometriosis growth, and I had issues previously with contraceptive pills. Under that advice, I thought it would be foolish not to try the coil.
Recovery was, I am sure, 10 times more difficult with the coil in. I was bleeding almost constantly and the pain I was experiencing was occasionally excruciating – drop-to-the-floor, thinking my insides were being torn out of me, kind of pain. I did some research, (mostly via articles from Nancy’s Nook Facebook group), and found that there isn’t any substantial evidence that hormonal contraceptives stop endometriosis growth. There is a chance they suppress symptoms, and for many women the coil/pill does help reduce pain, but they should be looked at as symptomatic management, not treatment for the actual disease.
Unfortunately the coil did not help reduce my pain, so I got it removed quickly, easily and painlessly at a local sexual health clinic. I genuinely felt a sensation like my womb relaxed as it was removed. I’m not saying the coil or the pill aren’t good options for some people – they are definitely worth a try to help ease symptoms and worth giving a go – and I’m glad I tried them, but they were not for me. There is so much misinformation out there, and many people in the medical industry push these as a treatment, when the only actual treatment is removal of the endometriosis itself.
It sounds like your quality of life would have been much better had you listened to, diagnosed and given appropriate treatment a lot sooner.
Oh, definitely. Doctors disregarding women’s pain is a real problem. It’s not every case – my current doctor is proof of that – and I’m not trying to be negative about our NHS – it is wonderful. However, I’ve spoken to a large number of people who also had to work hard at persuading doctors to even take them seriously enough to send them to a gynaecologist in the first place, let alone be offered investigative surgery. Some still can’t get anyone to listen.
It can be mentally draining preparing for appointments when you know what you’re going to face is basically a fight; a fight to be believed.
You might have to research, have facts up your sleeve, have a pain diary with you, and rehearse what and how you’re going to say things to make sure you sound convincing, respectful, firm, but not aggressive… It is exhausting. When my new GP actually listened to me, and referred me without having to be persuaded, I burst into tears. They were tears of utter relief after years of worrying and fighting. I remember thanking her about ten times before I left.
If I had an earlier diagnosis, I would have been able to understand my body better, and sooner. I wouldn’t have had to go through years of people and doctors not believing that my periods weren’t normal. I am a strong advocate of talking about periods and I think there is a need for endometriosis and periods in general to have a real presence in school education. Why did I just learn about putting condoms on a banana, and learnt nothing about real-life pelvic health problems that I might have to face one day?!
That is a very good point! You’ve made the impact of endometriosis on your health very clear, but how would you say it has has effected your life, career and relationships? Especially considering your job is so physical and movement based.
I think I’m yet to recognise the extent to which endometriosis has impacted my life. This is probably the same for many people with a chronic illness – it becomes so much your ‘norm’ that you forget what ‘normal’ (if there is such a thing) actually is. To the outside world, it means I’ve often been seen with a hot water bottle stuffed into my trousers.
Obviously, the main impact, is the pain. The relentlessness of it and the different types of pain it can be. I heard someone once describe it as razor blades scraping at your insides, and that was the most accurate description I’d heard yet. Sometimes it’s a constant dull ache, other times it’s sudden and sharp, or a burning sensation, or twisting, or pulling. My pain is centred in the pelvis, but I know for some sufferers, the pain can travel into the sciatic nerve, down the legs, and endo has even been found in some patients’ diaphragms or lungs.
It’s a myth that endometriosis is just bad period pain – it is completely that, but it is so much more, and affects most women throughout their cycle. When I was affected the most through 2019, the pain was so bad during the rest of my cycle that, actually, my terrible period was a relief (if you’d believe that)!
Some people are surprised when they find out I have endometriosis and that I’m a movement practitioner, because often the last thing I want to do is move. I’ve been lucky, though, that endometriosis hasn’t made me give up my career. It can really incapacitate you and a lot of people with endo have sadly had to change career or stop working altogether. I’d be lying if I said it hasn’t affected my work at all, though:
Firstly, there’s the difficulty of whether you bring it up in an interview. I worry that if I do, there would be prejudice against me, that perhaps I wouldn’t do the job as well as someone without a chronic illness. Luckily, I haven’t felt that sort of prejudice yet, but I know it exists and I want to help fight against that.
Secondly, you don’t know when the pain will strike. I could be happily moving about a studio in a rehearsal and I’ll suddenly feel the pain and it could almost floor me. Again, I’ve been lucky enough to work with wonderful directors who are understanding, but when I’m teaching, I just have to push through it. One to two months before my surgery, when the pain was its most intense, I did have to turn down some jobs. I ended up not working for a good few months and as a self-employed person, I don’t get sick pay.
Finally, the fatigue that comes hand-in-hand with endometriosis has probably had the biggest impact on my work. I used to be the sort of person who would want to do everything all the time, work really hard, and fill my day from start-to-finish. The fatigue has made me slow down and has decreased my ability to work on multiple things at once. This has been difficult to face and obviously has a knock-on effect on my finances.
Fatigue is a symptom that isn’t talked about as much, but I’m sure affects most people who suffer with endometriosis.
Now on to relationships. Sex can be painful for people with endometriosis. This has an effect on intimacy in a relationship, but I am so lucky to have the most amazing and supportive partner. But even socialising is tough – sometimes the last thing my body wants to do is be out around other people, when instead it would just love a hot bath, bed, comfy clothes… My friendships have definitely suffered because of it.
The most major impact I haven’t yet mentioned has been on my mental health. I suffer from anxiety and depression anyway, and to be diagnosed with a lifelong disease was a real blow. It can feel like your body has betrayed you, and on bad pain days, like there’s absolutely no light at the end of the tunnel. It can also feel quite lonely when you’re around people who haven’t had to deal with any sort of similar situation – they might sympathise but they wouldn’t really be able to understand. Some can’t cope with my honest answer to their question ‘how are you?’ – I’m sure in most cases they only asked to hear a positive response, and if you respond with the truth it can make some people very uncomfortable! I don’t have the time for that anymore, and would much rather have a real conversation with someone about how rough I am feeling, and how they are truly doing, without any pretences.
Maybe that’s one benefit from having a chronic illness; you find out who your real friends are.
I bet! That makes total sense. Continuing on that theme, how are you doing now since your surgery?! And what advice would you give to other suffering with similar problems?
Since my excision surgery I am so much better, but not 100%. I have more to deal with and further investigations to go.
My advice for others with endometriosis, or with pelvic pain, or strange periods, is talk. Talk about it. Talk about it to anyone and everyone that you can.
I started posting about it on social media last year and, although it’s only a small step, it is a step towards normalising it and periods in general. 1 in 10 women suffer with endometriosis. About 1 in 10 people suffer with diabetes, and I bet you wouldn’t be able to find anyone who doesn’t know what that is.
Talking about your pain with people you love also helps you feel less alone.
If you don’t have a lot of people to talk about it with, get online and find a support group. Joining these 3 Facebook groups changed my whole experience of dealing with this disease, in different ways:
- UK Endometriosis Support & Awareness. This is a great place just to chat with others and get great advice, love and support through the whole thing.
- endoMEMEtriosis. A great place for endo-based lols!
- Nancy’s Nook Endometriosis Education. Not a discussion group, but this page is FILLED with facts, research, file, tips, advice, etc.
There’s also the Endometriosis UK website which has info and numbers to call to chat to volunteers. The charity do lot to help people with endometriosis, such as holding support groups and running seminars/conferences. Their website was the first thing I turned to in order to learn more after I found out I had an endometrioma and felt like I had been left in limbo.
Another incredible resource is the BSGE database; it shows you your local accredited endometriosis centres. They will have access to endometriosis specialists and will, for the most part, really know about the disease and be your best port-of-call for excision surgery.
And not forgetting Marilyn, obviously, where you can find loads of informative and interesting articles and resources about endometriosis!
Haha! Of course. Thank you, Jacinda.
You’re welcome. Also, when you do get an appointment with a gynaecologist, be prepared with questions and write their answers down. Information is your power here. Check out the NICE guidelines on endometriosis and have some facts up your sleeve. Don’t be afraid to say “actually, that’s not okay, and I want further/better treatment.” Don’t be afraid to put your foot down – keep pushing and try to surround yourself with people that will be on your side, including looking for a better doctor if needed. I know it can be exhausting, but your health is the most important thing.
Thank you so much, that is amazing advice and will help a lot of people, I’m sure. Finally, can I ask how you manage your condition on a daily basis?
In terms of managing pain, throughout 2019 I was taking a lot of strong painkillers, but they don’t always help and your body can’t deal with them on a regular long-term basis. Hot water bottles are the best thing. BeYou patches were a great little find as well. Hot baths can sometimes work wonders in relaxing your pelvic muscles and helping reduce pain. Yoga can be useful; gentle hip-focused yoga stretches can help release tension in the pelvis.
I would also recommend looking into the ‘endo diet’ – essentially, it means cutting things out of your diet that are inflammatory, and increasing your intake of anti-inflammatory foods. I cut gluten out of my diet completely and noticed a significant reduction in the ‘endo bloat’, from it being really painful and debilitating to practically non-existent. The diet steps I’ve also taken include cutting caffeine and alcohol, and I have drastically reduced my dairy intake and reduced the amount of sugar I eat (although sometimes you just really need some cake). I eat a lot of veggies and use herbs and spices like turmeric in a lot of my food as this has good anti-inflammatory properties. There’s definitely more to it so it’s worth checking out, although I know it does not work for everybody!
Finally, try and teach your mind that you are not your illness. Even though it’s damn difficult some days. Take things one day at a time. You’ll get there.
Thank you so much, Jacinda. And from all of us at Marilyn, we wish you continued strength, happiness and health. You are a true endo-warrior and we salute you!