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Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (6)

It’s November 2015, I’m in bed with a really bad chest infection. As part of this, my voice goes and while the chest infection finally clears after a long three weeks, my voice stays horse. In January, I finally decide I should get this checked out and am told by the ENT (ear-nose and throat) specialist who just stuck a camera on a long thin tube through my left nostril and down the back of my throat, that I have a little bump on my right vocal cord, which is most likely a polyp.

“This is quite common in people who use their voice a lot, like singers or teachers," my consultant tells me. "It’s usually nothing to worry about. It can be removed quite easily during a little operation. It’s a day case. You’d come in in the morning and you’re back home in the afternoon. It is a full anesthetic, but the actual operation shouldn’t last more than thirty minutes. You need two days of total voice rest afterwards to allow the vocal cords to heal and a couple of weeks of speaking as little as possible. You’re a teacher, so arrange for time off. I will book you in with our speech therapist afterwards, who will help you with your voice recovery.”

I am sitting there, listening and I have got that silly, pleasing smile on my face again that tells the outside world I am absolutely fine and am just happily cruising through whatever life throws at me.

“Great, can you book me in?” I hear myself say cheerily.

To be honest, at this stage I haven’t got the strength or inclination to even look into this further. I am a mum, a wife, I work albeit part time and I already have endometriosis. The last thing I need is another illness to worry about. So I decide to just go ahead, have the operation and hopefully this whole thing will just disappear as quickly as it came.

It doesn’t.

I find myself back in the consulting room within six months. “Well, in some cases it might require two operations. Most cases are solved after the second operation though. On extremely rare occasions, this can turn into a chronic condition, but that is very, very rare.” Press repeat. Operation two, followed by more speech therapy.

My speech therapist charges £80 an hour and is currently teaching me how to breathe. I feel a bit short changed. Surely breathing is what happens automatically? (It will take a few more years before I realize how vital correct breathing is to our whole wellbeing and what an important lesson this was.) I also learn to blow bubbles into a plastic cup with a lid. Some people do earn their money easily, I find myself thinking. I have no idea yet, that speech therapy sessions will become part of my life for a long time.

All I want to do is soldier on with living my life, but it seems that the more I try to ignore this second illness, the more persistent it gets. When the growth I am now told is not a polyp, but a papilloma (much harder to treat), comes back a third time, my consultant refers me to another ENT department that deals with chronic voice and throat conditions, which mine is now classified as. I decide it may be time to actually look into this a bit closer.

Papillomas are wart like growths caused by the human papilloma virus (HPV), which apparently is a very common virus that 95% of the population get infected with at some point in their lives. Usually our immune system deals with it within a few months without the need for medical intervention. Well, I am not surprised my immune system isn’t dealing with it. After all due to my endometriosis, my immune cells are kept on their toes every month, are working overtime and seemingly just cannot put out the fires as quickly as they pop up.

I also find out, that the changed cells I had on my cervix after my son’s birth are caused by the same virus, albeit another strain of it. When I ask my ENT consultant whether there could be a link, he blushes, gives me an embarrassed cough and tells me that his area of expertise is ears, nose and throat and he couldn’t possibly say anything about my cervix. He would clearly rather be dead than having a discussion about my sexual organs. I wonder if through oral sex the cells from my cervix could have got into my throat, but decide I better not discuss oral sex with him for fear of him actually having a heart attack.

I am in despair. When did we get to the point where doctors stopped looking at us patients as one entity and started specializing in sections of us, totally losing the sense that there is a connection between those sections? I’m not a machine with parts that are put together and can just be fixed, repaired and exchanged like parts of a printing press or a car. Surely my body is one system. Why am I made to feel like I am an idiot when I ask if there is a connection between HPV cells on my cervix and HPV cells in my throat?

I generally get the feeling most consultants I meet are not used to anyone asking questions. What worries me even more, however, is that the minute I start asking questions, they quickly run out of convincible answers. Some at least have the honesty to admit that they don’t have the answers – especially when it comes to chronic illnesses - and are simply doing what the system allows them to do, in order to satisfy patients who want to feel they are getting help.

What I learn is that the gods in white are just humans like me. This is what Dorothy must have felt like when she discovered that the great Wizard of OZ is only a little common man. I feel almost sorry for them. A desire to help and heal must be part of a doctors’ motivation to choose this profession in the first place, so not being able to truly do this, can’t be an easy pill to swallow. People come to them expecting miracles and armored with knives, scalpels and anesthetics they perform these miracles. Sometimes even when they know very well that these are not actual solutions to the problems, but just short term fixes.

At least I know where I stand. Although where I stand is now looking vaster, scarier and lonelier than it ever did before. In the meantime, my body is literally deteriorating every month and spiraling out of my control. I felt my endometriosis symptoms getting worse after the first operation, but manage to get back in control after a few months. The doctors tell me, the anesthetic is out of my system within days of surgery. I feel more like it takes my already weakened body months to recover fully from a very simple procedure. I observe the same reaction after operation number two. Operation number three and four on my vocal cords follow. Each operation worsens my endometriosis. I am trapped in a viscous circle. It takes several months to get my endometriosis back under control after each operation with diet and supplements, only to be told just as I get there, that I need another voice operation. I am exhausted. I am so fed up of being ill. And I just cannot see a way out.

I hit rock bottom after operation four. My voice has disappeared. Gone. It clearly had enough. I wish I could join it. Unfortunately, I am left in my house, in my job, with my family, my friends, my doctors. Just that now I can’t communicate with any of them, at least not through our former preferred channel of communication called “speech”. It is normal to have two weeks voice rest after an operation and to then have to go to speech therapy to slowly regain the strength to speak again, but this time, nothing happens. My voice does not come back, however many bubbles I blow into my plastic cup.

I tell myself not to worry, that it will come back eventually just like it did after all the other operations, but as the weeks go on, I am getting really scared. What if it never comes back? I ban that thought very quickly. Don't allow myself to think it.

I find out that by week three of no voice, most of my friends and family give up trying to communicate with me. Visits get less and less until they stop altogether. I understand. Holding monologues isn’t much fun. But that doesn’t make it any easier for me. I try to stay positive and imagine a life without a voice. I see myself learning sign language: maybe I could get a job at translating theatre performances to the hearing impaired. That is the optimist, glass half full version of me.

The other part of me, the one I am desperately trying not to succumb to, find herself in a much bleaker reality. I avoid the company of others whenever I can. Even going to the supermarket is uncomfortable. Do people perceive it as rude, when I don’t say good morning or thank you? I time my dog walks so I don’t meet others and chose remote locations where the risk of even just having to say hello to anyone is relatively low. When I do cross paths with others, I smile as broadly as my cheek muscles allow, trying to make up for the lack of words. Why do I care so much what other people might think? I don’t want them to think I am grumpy or rude. I am nice. I am kind and loving.

The only people I do interact with are my husband, who doesn’t talk much anyway and is rubbish at understanding my sign language and my son. The latter I must say excels at translating my weird hand signals or distorted facial impressions and has the patience of a saint reading my scribbled notes. At some point, he even writes back, which makes me laugh “I can hear, you know” I write back to him on the little notepad we use. He laughs: “Oh yes, mummy, I forgot.”

I am trapped in a body of pain and I cannot even scream. I am keeping things together as best as I can, but I fear my best is not good enough anymore. Once my husband and son have left the house in the morning to go to work and school, I go and sit on the lounge sofa and cry. I sob silently. In my head, I am sitting at the bottom of a really deep, dark well. I can see light very far above me, out of reach. I know this is where life is. There are people there, but they can’t hear me. I know, I cannot get up there on my own. So I just crouch in the dark and the thought “I don’t want to live like this anymore” slowly becomes “I don’t want to live anymore”.

My throat feels sore, my body has reached a base pain that seems to be there constantly for two weeks every month, turning into a new level of agony during my period. No painkillers can touch it. My immune cells or whoever is responsible for dealing with the endo inflammation take two weeks every month to get the fires raging through my body under control, before my next period lights them all up again. It feels like I am constantly having a period. The two weeks of respite I get, when the pain subsides to a level that allows me some sort of resemblance of a life, are not enough to recharge my batteries for the next onslaught.

I am trying as hard as I can to keep things going, but each month little parts of my life keep slipping through my fingers. Singing lullabies to my son before bedtime went a long time ago, my husband now reads him his bedtime story and while I can see how this brings the two of them closer together, I miss that precious mummy-son time.

I am desperately clinging on to my work as a business German teacher, but deep down I know it’s only a question of time until this will have to go. I’ve currently got friends covering my lessons until “my return”. Before losing my voice completely, I had already stopped replacing clients when courses came to a natural end and gradually work had become less and less. Translation jobs dry up, as many of them were linked to the companies I taught in and I don’t have the strength to go out and look for new work. Each day, I am slipping a little bit deeper into that dark and inhospitable hole called solitude, searching desperately for the tiniest remnant of my purpose in life.

After six weeks of no voice, a whisper returns, but unless you’re standing right in front of me, it’s hard to hear that whisper. Speaking on the phone is a nightmare. Every now and again my husband complains that nothing gets done anymore, I don’t think he realizes how hard it is to phone the gas company or the bank when they can’t hear what you say. In most cases I don’t even get passed the hurdle of the automated directories, as the computers can’t understand my option “ONE”, however eloquently and clearly I whisper it. Our society is made for people with voices.

On the up-side, I learn a lot of new things. The biggest thing I learn is how much rubbish we talk all day. Having to be as economical with my whispers as I can be, I think not twice but three or four times before I say something and I slowly become aware of how many things I used to say that were completely unnecessary and irrelevant. Words that filled a space randomly with no consequence whatsoever. Soap bubbles floating through space and while they may have been a pretty little thing, nobody misses them once they’ve popped. Chit chat. Gossip. Small talk. How I wish I had truly appreciated the sound of my voice when I had it.

As my life is falling apart in silence, I am observing, watching, realizing, becoming aware. It's all I can do these days. I feel like internally I am dying a slow and very quiet death.

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