Boom Shake the Womb!

A guest post by @LizzieBennett_ for endometriosis awareness month.

Life Lesson by Don Raye
The fierce wind rages
And I see how trees survive
They have learned to bend

Before

I’m 13 and I’m being prescribed the pill for irregular, painful bleeding. Apparently my cycle just needs to settle down.

I’m 14 and I’m being rushed into hospital to have my appendix removed. Only when it comes out it looks like it isn’t the culprit after all.

I’m 15 and I’m put on the contraceptive injection because I’m still bleeding for two weeks at a time and being physically sick from the pain.

I’m 17 and I’m asleep on my mum’s bathroom floor for the second night in a row, because the cold floor is the only thing that will ease the pain in my lower back and I may as well be somewhere that I can vomit.

I’m 18 and I finally see a consultant. I’m too young to have endometriosis she assures me, but after pressure from my mum she agrees to do the operation to rule it out so that we can focus on the other ‘much more likely’ causes. She gives me surgery for a bet.

I’m 18 and she pulls back the curtain after my surgery to inform me without kindness that they did find endometriosis on the back of my womb. It is now removed and she’ll see me for a follow up. She never did and I did not receive the slightest advice on how to manage an incurable chronic condition. Everything I ever learnt is from charity websites and women’s magazines. I have never underestimated Marie Claire.

I’m 20 and I’m back to bleeding for weeks at a time. I’m informed that further surgery should be a last resort and I need to find hormonal alternatives. They give me the implant.

I’m 22 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 24 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 27 and I bleed for eight weeks over Christmas and New Year. I’m extremely bloated, and uncomfortable. I have a constant bearing down sensation in my back and cramps in my legs. I often cannot get out of foetal position because of the pain. I’m exhausted and I find it difficult to open my eyes in the morning; I worry that I am becoming depressed. My anxiety is through the roof, but who can blame me when my whole body feels like it’s against me?

I’m 27 and I’m seeing a private consultant. I’ve been unable to move from my bed and have been experiencing labour pains when I bleed. The pain is now also present when I don’t bleed. I’m asked to rate the quality of my life. I circle ‘0’.

I’m 27 and the consultant shows me pictures of my womb. She’s removed endometriosis covering the left side of my womb and the pouch of Douglas. My womb collapses when it is touched, the muscles have deteriorated. She suspects adenomyosis. As my mum is crying next to me all I can think is ‘Thank God someone believes me, thank god it’s not all in my head’.

I’m 28. It’s the day before my best friend’s wedding and I can’t stand up straight because of the pain. I’m so tired from not sleeping that my vision has started to blur. I manage the pain with tramadol, codeine, and jäger bombs, but I know I was close to not being able to be there. I consider how much more I am willing to miss for this disease.

I’m 28 and I’ve decided to have a hysterectomy. I’m on a drug that has shut down my pituitary gland. I am so sick I honestly feel like I am dying. Someone asks me what I do all day now that I can’t work and I’ve had to take a leave of absence from my PhD. I survive, I tell them, every ounce of my energy from the second I wake up to the second I go to sleep goes into surviving. I google my first consultant for my PALS report and it transpires she is writing a book on cultivating ‘compassion’ in the NHS. Yep. Compassion.

I’m 28 and I’m doing the compulsory pregnancy test before my hysterectomy. The fact that I haven’t had sex with anyone for two years apparently doesn’t mean I can skip it. I’m at peace with having family in whatever way it comes, but I can’t help but remember the daydream I’ve said since I was a teenager of waiting for my partner to come home and greeting him with the test in my hand and hugging each other with mad joy. Tears fall silently down my face in the starkly lit toilet, whilst I pee on a stick. No hope of a positive test. No partner.


After

One of things that I did not expect after my operation were the irrational feelings occasioned by the trauma of my muscles inside. I had read that sometimes your other organs go into shock at the removal of the womb, but I hadn’t been prepared for my body literally feeling like I had given birth. In semi-lucid moments in those first couple of weeks I would wake up reaching my arms out and wanting my baby. It was, even for someone not naturally broody, pretty horrific.

For the next few months after the operation I would quite often have to leave nights out, or lunch dates, early to cry. I wondered if this was a delayed grief, but in retrospect I think it was a combination of extreme tiredness and sheer, abject relief. Relief that I had made it through those long months, relief to be past the fear of the operating room, and relief to finally have my body back on my side after 15 years.

Probably one of the hardest things about my illness as young women has been painful sex, and bleeding during or after it. On top of which, the irregularity of my periods has always meant that I could come on at any time. So on a date when the glasses are being cleared from the table, and they’ve inched their chair over, and I’m laughing and playing with my hair, and they say do you fancy coming back to mine for a drink? My first thought has never been ‘get in’, or ‘I thought you’d never ask’, but ‘have I got sanitary stuff with me?’ Or ‘what if I bleed in the middle or it, or in the night if I stay?’ And if this doesn’t put me off entirely, it means that I look like I got incontinence issues, because I constantly go to the loo to check that I haven’t started gushing blood at various stages of what should be that amazing/awkward/disappointing first hook up.

No one wants Jaws the movie on their first date.

Then, let’s say it goes all right, and you find someone brilliant and understanding. Those things don’t just go away. It’s never going to be fun for someone to feel like they are hurting you when you are being intimate. Sex becomes bound up with worry. I have found that this means that I hold something of myself back during the moment. People sense when they are not getting all of you, and it has implications.

I am now one of the lucky ones. However, there are still consequences for the rest of my life. All of the literature for post-hysterectomy sex is geared towards intercourse with your ‘loving husband’. I’m 28. It could very likely be an intoxicated encounter with a tinder date. Even once I’m passed the initial terror of being naked with someone again, at what date do I casually slip in that I can’t have children the conventional way? Admittedly I was ambivalent beforehand, but ambivalence is a topic that can wait. None of this means that it was the wrong decision; I feel extraordinarily well and happy and optimistic about the future. However, the right decisions are still hard decisions.

So, why am I writing this? Because one of the most important things anyone can do to raise awareness is to tell their story, and for others to share the stories that women tell. It legitimates the experience of women with endometriosis. It sends a message to young girls to trust their bodies. And, hopefully, it may give them the strength to persist with getting a diagnosis when they are told that it’s just ‘normal period pains’.

I can assure you – nothing about my young life with this disease was normal.

As well as difficulties I have faced, I have been lucky enough to also receive fantastic care and wonderful acts of kindness. From the nurse who took my blood and told me we have to make decisions that are right for us at the time, to the porter who held my hand as he wheeled the trolley in to the operating theatre, and the physiotherapist who spent an hour with me before my operation and made everything about those bruising, brutal first two weeks of recovery a bit more bearable.

I have seen great changes in the last ten years in the way that endometriosis is spoken about and treated, and I look forward to the seeing what is achieved next ten years. However, I am aware that for some women it is already too late. These women have met the loss of hopes, dreams, jobs, and relationships with bravery and grace. This piece is written for them.

For further information or for anyone who would like to support or donate to a charity during endometriosis awareness month:

https://www.endometriosis-uk.org/

http://www.adenomyosisadviceassociation.org/

http://www.hystersisters.com/


Elizabeth Bennett is a folk singing, footpath walking, gin drinking PhD student. Having been diagnosed with endometriosis at 18 after 5 years of G.P. appointments, she took the decision to have her uterus, cervix, and fallopian tubes removed at 28, in order to regain her health and restore a sense of self. With her brilliant friends and family she had a stitch and bitch hysterectomy party ‘Boom Shake the Womb’. She has not met Mr Darcy yet, but she has a sneaking suspicion he may arrive in the form of a Sussex Spaniel.


You can tweet Elizabeth at @LizzieBennett_

Have a story to share? Email me at endomyworld@gmail.com

What is recovery anyway?

It’s been a year now since my excision surgery, where endometriosis was removed from my ovaries, utererosacaral ligaments, bowel, bladder, pouch of douglas, peritoneum, and diaphragm. Lot’s of people have been asking for an update about how I’m doing, and I realise it has been a while since I wrote about my own condition, so I thought I’d write this post to update you all and to share some of my thoughts managing the surgical ‘recovery’ process.

recovery

The road to recovery is a long one. There will be obstacles.

I give so many different responses to the question ”So how are you now?”, depending on who is asking- I’ve realised that not everybody needs or even deserves to hear the truth. The honest answer to this question is this: I’m doing OK. Not fantastic, not terrible.

To clarify, I am certainly MUCH better than I was before my surgery, the difference is remarkable. I now no longer have period pain, which is a huge shock and something I never believed was possible for me, having spent 15 years in agony with every single period. As Mr B and I are trying to conceive, I am off the hormones and painkillers , and am managing well, which would not have been possible a year ago. I am actually enjoying being totally drug free, and am still using holistic and dietary techniques to promote my health, along with exercise, which I am really enjoying. This disease has basically turned my into a hippy. Or Gwyneth Paltrow. I’m OK with that.

On the downside, I’ve still been experiencing chronic fatigue since my surgery, which is with me every day and ranges from mild to debilitating. I do have adenomyosis and some other health problems which are likely playing a part in this though, so I don’t see this as any kind of failing from the surgical process. Slightly alarmingly, I have also been experiencing what I think are random diaphragm and endometrioma related pain flare ups again over the last couple of months, but I am just going to track these for a while before I start to panic or take any action.  Another gloomy point, no baby in sight yet, and I haven’t even had any near misses, and that has been getting me down a little bit too sometimes. I know it’s relatively early days in the process though- so I am staying as optimistic as I can. (Funny story though- I went to London Zoo with Mr B recently, and I cried when I saw a stork. New level of crazy right there!)

So, as ever when living with chronic illnesses, there are pros and cons, to my current situation, but I am looking on the bright side about how much progress I have made. Thinking about how far I have come since my surgery a year ago, I started to understand that recovery from a major laparoscopy for endometriosis and the journey back to health is a long one- much greater than the couple of weeks they advise you to take off work. In my view this journey can be helped or hindered by two key factors, which I’ve outlined in greater detail below.

Managing my own expectations:

chronic illness forever
As we all know, there is no cure for endometriosis. While surgery, hormones, or dietary approaches can be useful on their own or in combination, they will not solve the problem completely.

When I see other people sharing their stories online, and through my own advocacy work, I have noticed that many put all their hopes onto a particular approach ‘fixing’ them, in the sense of making them feel exactly like they did before they got really sick.

This makes me worry that they are setting themselves up for disappointment and failure. I am not immune from this myself, for at least a year after being diagnosed I was desperate to work out how I could get back to being my previous healthy self and carry on as though nothing had happened. Eventually I realised this isn’t feasible, my body has changed and I have changed too much. So I gradually started to alter my mindset to focus on how I can become the best and most healthy version of my my new, chronically ill, self.

I’ve found this new approach so liberating and helpful- and it certainly isn’t defeatist if that’s how you’re reading it. It meant that I went into my surgery with positive hopes that it would lessen my symptoms and improve my quality of life, while also being realistic about what it could really achieve in both the short and long term: So when my recovery was hard, and I’ve had flares up, and my endometrioma came back,  and my diaphragm hurts, it was disappointed for sure, but I wasn’t crushed like I used to be.

This new approach to my thinking has also encouraged me to keep striving for health through diet and exercise etc, rather than feeling demotivated and giving up on myself because things will never be as they once were.

Managing the expectations of others:

get well soon
As well as managing your own expectations about what a treatment or approach can feasibly achieve, I have also realised it is just as important, if not more so, to actively manage the expectations of the people around you. No matter how good I have felt about my progress, it has sometimes only taken a small comment from other people to bring me down and lower my confidence. Examples I have experienced have included:

Family member: It’s disappointing you’re still experiencing some these problems isn’t it?!
Friend: How come you’re still feeling bad- do you need another surgery?
Boss: What do you mean you still have fatigue? I thought you had surgery to sort these things out!

Even though I have told people that endometriosis is a chronic and incurable condition, the fact is most people are much more familiar with acute illnesses that get better with treatment, and they will fall back on these experiences to make sense of what you’ve been going through. I mean, people have surgery to fix them right?!

I think if and when I have another laparoscopy, I will work to reinforce realistic expectations of my friends, family, and colleagues during and after the procedure, to improve their understanding and  to limit these comments. Well informed people makes much better cheer-leaders. When people expect that you’re going to be well, or improved, or cured, it is really very difficult to confide in them that your not, and this can increase feelings of loneliness and isolation. It feels like you’re somehow disappointing them or simply not trying hard enough to get better.

Goal setting to aid recovery:

goals
There were a few months after my surgery when I felt frustrated with my progress (well, my perceived lack of) and felt like I was just drifting aimlessly through life without any vision for myself or support. This was really weird for me as I’ve also been a planner and had a strong sense of where I wanted to be. My self confidence was in tatters, as was with fitness and progress on my PhD.

What has really helped to turn this around has been having specific and realistic goals to work towards with regards to my recovery and general health. Over the past year these goals have included: Working on getting leaner, improving my stamina, working to reduce the inflammation in my body, getting pregnant, and finishing my PhD.

The joy of goals is they can be adapted over time depending on your needs and vision for yourself, and they help to develop your sense of purpose and self worth. Without them, the journey to recovery can feel like a never ending road to nowhere.

I would recommend making some short term goals immediately after surgery for the following weeks, and then introducing long terms ones gradually in the months afterwards. The key to success with such an approach is making sure the goals you set are realistic, and that you can identify the steps you are going to take in order to achieve them.

So what exactly recovery is, and to what extent it is possible, I still don’t really know. It’s certainly more than physical healing from surgery and is an ongoing process requiring lost of thought and practice. Like everyone else, I am just trying to do my best in difficult circumstances, and trying to make positive decisions that are right for me.  If you’re feeling lost, or discouraged, on your road to better health, take heart, and take one day at a time. We will get there in the end.

I hope these thoughts are useful to those of you who have had or will be having endometriosis surgery. I would love to know if you have any other tips for aiding recovery and health! And what goals you have for yourself despite endometriosis/chronic illness.

Love, as always,
Claire
xxx

My experience of living with diaphragmatic endometriosis.

Ah, the diaphragm-  a sheet of skeletal muscle only a quarter of an inch thick and located beneath the lungs. It plays a crucial role in facilitating the lungs to inhale and exhale (aka breathing), and in separating the thoracic cavity (containing the heart and lungs) from the abdominal cavity (containing your stomach, liver etc).

diaphragm diagram

Who knew such a tiny organ could produce such armageddon like pain!

The diaphragm is a greatly under appreciated organ in my experience- like most people I’d never given mine a second thought until it was attacked by endometriosis and became extremely pissed off. From that point my diaphragm started to control my life, and let to much confusion, misdiagnoses, and experimenting with alternative therapies before we worked out what was wrong!

I was officially diagnosed with diaphragmatic endometriosis (sometimes interchangeably known as ‘thoracic endometriosis’) during my first laparoscopy in 2014. Since my entire endometriosis diagnosis came as a bit of a shock, this particular piece of information didn’t stand out as particularly alarming.  At that moment I did not know (nor was I informed- thanks doc) that endometriosis in this region is extremely rare , strongly associated with severe pelvic disease, and in extreme cases may cause catamenial pneumothorax- where a lung collapses around the time of menstruation! I definitely think I’d have requested follow up sooner if I’d know this!

Conducting my own research on this topic post-surgery was a real eye opener, a massive EUREKA! moment in fact. Did you know, for example, that the shoulder/back/neck pain caused by diaphramatic endo is actually referred pain caused by irritation of the phrenic nerve? Or that the majority of cases affect the right side of the diaphram rather than the left, due to a process called embryonic patterning? Finding accurate and detailed information was not easy though, even my beloved ‘Endometriosis For Dummies’ book revealed zilch. The reading I did manage to do somewhat perpetuated my feeling of loneliness at first, as I did not meet anyone else in my support group or online for quite some time who also suffered in this way. And for me, my diaphragmatic symptoms made up a significant amount of my pain.

What was fascinating though was how many women have approached me interested in this topic, and with lots of their questions and concerns relating to it. Many suggested they could not find many personal accounts online or research to compare their own symptoms too, and suggested that many doctors had been dismissive of their concerns because the condition is rare. Because of this, I’ve decided to write this post to address the most frequent questions that I am asked, and to tell my own story in greater detail. I hope you find this helpful! 🙂

How was your diaphragmatic endometriosis diagnosed, and what exactly was found?

As mentioned above, I was diagnosed during a laparoscopic surgery in 2014. This surgery was performed by a general gynecologist not an endometriosis specialist. Two nodules, a small amount of scarring, and an endometrioma (Yes! You read that right! An endometrioma!) were found on the right side of my diaphragm. I had previously had a number of ultrasound and MRI scans on my chest area which had (very frustratingly) come back clear.

Some of the endometriosis nodules found on my diaphragm.

Some of the endometriosis nodules found on my diaphragm.

What symptoms do you experience as a result of your diaphragmatic endometriosis?

I initially began to experience right shoulder tip pain in 2012. This was a sharp sensation comparable to the oh so miserable gas pains experienced after a laparoscopy. This pain made moving my right arm very difficult.

Over time the pain spread into my back, neck, and arm, and became a daily feature of my life. I have marked the precise locations on the diagram below. Much of this pain felt muscular to me, like a deep burning pain after working out too hard. I actually began to have frequent massages (FYI- they didn’t help my pain, just to empty my bank account) as I was convinced I had just pulled a muscle in my shoulder at the gym.

Where I experience pain from my diaphragmatic endometriosis.

Where I experience pain from my diaphragmatic endometriosis.

You know when you have a bad bruise on your skin and you press it with your finger- the whole right hand side of my back felt like this to the touch. My GP (mis)diagnosed me with Repetitive Strain Injury (RSI) and gave me some medication for this (which again, didn’t help). When my symptoms flared up, breathing would sometimes become very difficult and something I would have to concentrate on. I also found it impossible to sleep lying down and had to prop myself up with a number of pillows or sleep on the sofa sitting up.

I cannot over-empahise how agonising diaphragmatic endometriosis has been for me. It has definitely been the worst pain I have EVER experienced. During the summer of 2013 it flared up so badly that I had to spend 3 weeks in bed as I was literally unable to move my arm, back or neck without almost passing out from pain. It was a really frightening time. As an interesting anecdotal side note, the other women I have met with this have said the same thing about how extreme the pain is, so I don’t think this is one of those cases of me being weird!

What impact has endometriosis on the diaphragm had on your quality of life?

To be completely honest, a massive and catastrophic impact. Having your right arm incapacitated on regular but random intervals made having a ‘normal’ life very challenging . Severe flare ups would often last for several weeks at a time and meant that I couldn’t drive to the office, work on my PhD on my computer, cook for myself, exercise, or socialise etc.  It was around this time I started to become isolated and depression took a strong hold of me, one that still has not let go.

What treatments have you used, and how effective were they?

I found that my diaphragmatic symptoms, as with my other general endometriosis symptoms, respond well to anti-inflammatory medication and to heat.  Not well enough to use drive or exercise, but enough to stop me from passing out at least.  It’s the small victories we must celebrate in such hard times. Taking the combined contraceptive pill over the last year prevented any major flare ups and been a total lifesaver in many respects, but I would still get mild shoulder and back pain on some occasions.

Fairly sure this is my future, much heat pad abuse is going on daily.

Fairly sure this is my future, much heat pad abuse is going on.

In my most recent surgery I had the endometriosis excised from my diaphragm! It was pretty exciting for me, as I wasn’t sure if they were going to be able to remove it, as they had warned me this may have to happen in a separate surgery at a later date. I’m hoping this is going to solve my problems in this area, but will have to report back in a couple of months time. So far so good though, no symptoms to report 🙂

My doctor/consultant/surgeon won’t take my concerns about this seriously, what should I do?

I’d print out and take this paper with you, and insist on them taking your concerns seriously. Or ask for a referral to an endometriosis specialist– I’d like to hope they’d at least entertain the idea that endo can hijack the diaphragm  (please feel free to correct me if I’m wrong). It is possible for surgeons to check your diaphragm during a laparoscopy if you do have concerns. You may have to ask though as not all doctors routinely check this area.

Do you have any further information about diaphragmatic endometriosis that you have found useful?

I found these two endopaedia articles (see here and here) to be an informative and accessible starting point.

So that is my story so far with diaphragmatic endometriosis. I’m frustrated that this problem, yet again, took years to sort out and involved misdiagnosis, but I am happy that I have now had the surgery that will (hopefully) solve the problem. Meeting other people with the condition, and speaking to other women about their concerns, has been so helpful in my recovery process and has taught me so much more than reading. Most of all, I have certainly come to love my diaphragm and appreciate what it does for me 🙂

Please do let me know your thoughts or if you have any other specific questions. Always interested to hear from anyone else who suffers with diaphragmatic and/or thoracic endometriosis too, do my symptoms match your own?

Love,
Claire
xx

It’s two days until my excision surgery- scared much?!

It’s just two days to go until my excision surgery at UCLH! I’m hopeful that the surgery is going to give me some relief and restore some quality of life. Unfortunately this means that tomorrow is the dreaded bowel prep day *sob*.  Having undertaken one before I know what a miserable experience it is.

bowel prep
There are so many conflicting thoughts and emotions rushing through my head at the moment, and everything just feels a bit difficult. It really isn’t easy to be an endo warrior. I never knew it was possible for my brain to be so busy. It is constantly like: Will this work? How much will it hurt? Will they tell me I’ll never have a child? I don’t want to die! I’m not going to die-don’t be stupid! What if the anesthetic doesn’t work? What if they bowel prep doesn’t work? What if you end up with a colostomy? Hey, it’s all worth it in the end if I start feeling better! But what IF I don’t feel better? And so on…

Despite all this ruminating I’m actually feeling quite numb overall and just want to get this whole ordeal over with. It seems that the terror/ excitement / anticipation are all counterbalancing each other.

I’ve also made the big/stupid/brave decision to take some time out of my PhD to get my head and body back into working order again. I won’t return to the office until January, and I am really grateful that I have this opportunity to just relax and focus on myself for once. No more pretending everything is OK. I know I’m lucky to be able to take a break, as this isn’t an option for so many people living with chronic illnesses who desperately need it.

So, I’m off now, but plan to post an update about my surgery experience as soon as I am well enough. Do take care of yourselves in the meantime! 🙂

Love,
Claire
xx