living with diaphragmatic endometriosis
By: Fela M'tima
FELA: Hey Claire! I was so happy when I stumbled upon your article about your arm and shoulder pain due to diaphragmatic endometriosis, seeing as I struggle from the same symptoms. Before we get into that, could you give your full name, where you're from, and what chronic illness's you are battling?
CLAIRE: Hi Fela! It’s always good to meet another (diaphragmatic) endosister- although of course I wish out paths could have crossed in some other way!
My name is Claire Barker, and I am from Hertfordshire in the UK. I’ve been diagnosed with endometriosis and adenomyosis for just over two years now, but like many women my diagnosis was a long time coming and I had been experiencing debilitating symptoms for 14 years prior to this. I’ve been blogging about my post-diagnosis journey as a way of staying (relatively) sane and connecting with others in the global chronic illness community.
FELA: How soon after being diagnosed with Endometriosis did you notice shoulder pain?
CLAIRE: It actually worked out the opposite way for me. About three years prior to my endometriosis diagnosis I started getting these seriously intense pains in my right shoulder, arm, and neck. Like, the most unbelievable burning sensation like my muscles were on fire, and my skin would feel tender when touched. I couldn’t understand where this pain was coming from, and neither could my GP apparently as I was diagnosed with repetitive strain injury and given a muscle relaxant. I also spent a fortune on needless massages!
Fast forward a few years to when I was having my first laparoscopy, and my surgeon found a whole lot of endometriosis inside of me, including on my diaphragm. There was actually an endometrioma growing on it, which is quite a terrifying thought. I was quite lucky that my surgeon thought to check that area, as this check isn’t always performed.
FELA: I've learned through my personal experience that these symptoms are quite rare, how did you physically and emotionally cope with having such intense neck, shoulder, and arm pain?
CLAIRE: Yes endometriosis on the diaphragm is pretty rare, lucky us!
To be honest, I didn’t cope with my symptoms for a very long time. The difficult thing about not having a diagnosis is that it can make it hard to be proactive in managing your symptoms or to access effective treatments. At it’s worst, I remember having to take a month break from my PhD studies as I couldn’t move my right arm at all and I was in excruciating pain all of the time as well as shortness of breath. I couldn’t get out of bed at all, it was insane. That was a really dark and difficult time.
After that flare-up settled down, things did get easier, I learned to cope by taking painkillers at the first sign of a twinge, and not to do strenuous exercise which seemed to make it worse. Applying heat to the middle of my ribcage where the diaphragm sits also works really well- treating the source rather than the referred pain in the shoulder. It’s counterintuitive but it really works. My blog post on this topic has also encouraged lots of women with the condition to get in touch with me which is great- it’s nice to know I’m not alone, as I don’t know anyone in my daily life who has this condition.
FELA: For those who don't know, what has it been like living with Endometriosis AND Adenomyosis?
CLAIRE: It certainly hasn’t been easy! Both of these diseases are very poorly understood by the medical community and the general population, and I think this has really exacerbated the difficulties of living well with chronic illnesses for me. It’s incredibly tough to constantly battle for a diagnosis and treatment when you’re so unwell, and then to come to terms with the lack of appealing treatment options available.
It’s also been tough as well at times as many people find menstrual health a difficult thing to talk about. I think I’d have received more support from many family and friends if my debilitating symptoms were equally severe but caused by a different, non lady-part related, condition. Sad, but true.
There have been small positives to my situation however, I wouldn’t want anyone in the same situation as me to give up hope. These conditions have forced me to take better care of my mind and body, have helped me to reassess my life priorities, and have enabled me to make some wonderful new friends all over the world. It’s a cliché but I never realised how strong I could be until I no longer had a choice but to be strong. Through my blog and tweets I try to capture the reality of living with chronic illness, while also encouraging people that there is a way to have a good life despite being sick. It’s just a process to get there.
F: How many surgeries have you had and have any helped relieve your diaphragm symptoms?
C: I’ve had two surgeries. The first was a diagnostic laparoscopy, but no endometriosis was removed at that time as my surgeon felt my endo was too severe for her to tackle. I then had an excision surgery a year later at a specialist centre in London, where endo was removed from a range of areas in my pelvis and abdomen, including lesions and an endometrioma on my diaphragm. I think this surgery has helped massively to reduce my diaphragmatic symptoms. I haven’t had any flare ups at all since, although I have had the occasional twinge of pain. I would say that my recovery from surgery on my diaphragm was rockier than for my pelvic organs though…I was in pain and was breathless for several months afterwards before I started to feel any real progress was being made.
F: What has been the most challenging obstacle for you personally, while battling Endo and Adeno?
C: I think it’s been the fear. Being diagnosed and living with any chronic illness is a terrifying thing, before you add in extras like infertility and organ damage that endometriosis can cause. People expect you to just cope and get on with things- the overwhelming nature of your situation just isn’t acknowledge, but it can be crippling.
Before my diagnosis I was convinced I was dying, as I knew I was really very sick but couldn’t find out why, and then being diagnosed with chronic and progressive raises so many alarming questions. Will I be able to keep working? Will I be able to have children? Will I feel this bad forever? Will my family support me financially? Why does nobody understand what I’m going through? Is my life ruined? For about a year post diagnosis I was completely broken by these thoughts, and was pretty much a non-functional human being.
These feelings are a natural response to the uncertainty that chronic illness brings, and they take time to work through. In fact, they may never completely go away and I now accept that and roll with it. It’s taken me about two years and much hard work to get to the point where fear isn’t ruling my life anymore. My conditions haven’t stopped me finding love, getting married, doing a PhD, getting a new job or travelling the world in recent years, and so I have to keep reminding myself that I have a worthwhile life and that things work out OK.
F: You have some really wonderful advice and tips in your blog and one article about feminine hygiene, could you explain that a bit more? Anyone reading this can find the article here.
C: Thanks- I’m glad you liked that post. It had a really positive response from many women.
After being diagnosed with endometriosis and adenomyosis, I wanted to embrace a more ‘natural’ lifestyle and get rid of as many chemical nasties in my beauty and household products as possible. Many chemicals are ‘endocrine disruptors’, which means that they affect the balance of hormones in the body. This clearly isn’t good when you have a condition like endometriosis or adenomyosis, which are linked to estrogen dominance.
I was so surprised to discover that the leading brands of tampons and sanitary pads are laden with a range of toxic chemicals linked for a range of terrible conditions from cancer to infertility. I immediately made a swap to pads made from 100% non-bleached cotton, and I recommend to all my friends and family that they do the same. It’s great that such a simple swap can protect your health in such a positive way. Pleasingly, I don’t actually feel like I’m compromising on comfort or quality either. I would encourage other women to do their own research, no need to take my word for it, and to make an informed decision about their product choices themselves.
F: That's so good to know! I will definitely be checking the pads I buy from now on and doing my research. Now, when it comes to tricky Adenomyosis, we know that the only cure is a hysterectomy, but do you have any other advice on how to manage it when that's not a path someone wants to take?
C: You’re so right that adenomyosis is tricky. I imagine my uterus and I will be parting company at some point in the future, but I’m nowhere near ready yet. I’d still like to have kids if I possibly can! Managing adenomyosis while trying to preserve your fertility is very difficult. I recommend following an anti-inflammatory diet as much as possible, gentle exercise, heat therapy, tens machines, and acupuncture for keeping symptoms at bay. You just have to play around with all the different options and see what works best for you. Oh, and if you need the painkilling drugs, take the drugs, there’s no shame in that. Turmeric can only get you so far sometimes.
F: Amen to that! So Claire, what has been the most successful treatment(s) for your chronic illness's? Whether they are natural remedies, surgeries, or medications.
C: I can’t deny that for me, it was excision surgery which radically changed my quality of life for the better. I never imagined it was possible for me to have a pain free period, let along go for months without painkillers, yet this has been my reality for over a year now- it’s fantastic. I know surgery is a drastic option though, and I wouldn’t encourage anyone to do this without seriously thinking it though beforehand.
I do also think that I feel so well these days because I’ve adopted a much healthier lifestyle and more natural lifestyle than I used to have. I try and eat healthy foods in abundance, get plenty of rest, and exercise in ways that I find enjoyable, which has helped to transform my physical and mental wellbeing. It takes time, money, and effort, but the consistency really pays off.
F: I'm so glad you got the relief you deserve and I want to thank you Claire for having such an informative blog and the kindness and vulnerability to open up about the journey you have been on, and continue to walk through. I just wanted to finish up by asking if you have any advice for women with diaphragmatic endometriosis?
C: Thanks very much for giving me the opportunity to share my story with you.
I think I would advise anybody with concerns to record and track their symptoms over several cycles to try and establish if there is a cyclical pattern to their pain in this area. Doing some research to find out if there are any doctors who have experience of diaphragmatic/thoracic endometriosis is also really important, as most have not encountered the condition much (if at all). Lastly, I hope women can reach out to me through my blog if they’d like to discuss their concerns on this issue. Connecting with other people having the same experience is such a great way to learn and be supported to make progress with your treatment.
You can follow Claire on twitter @theendolady