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Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (4)

Updated: Mar 16, 2022

A spanner in the works

I am crouching on the floor again. You already know that version of me: rolled together like a ball, holding my tummy, trying to breathe and relax my muscles that have gone into spasm. Something is different though to my normal period pain. I feel like one of my cysts might have burst. Oh, did I mention cysts? Ovarian cysts are another very common thing that present alongside endometriosis. I have two and they vary in size, but are usually around the 4.5-5cm mark. They are a bit like mini balloons filled with blood. The pain I'm in right now is even more unbearable than normal, if that’s at all possible. I’m nauseous and scared.

It’s Sunday. Of course it’s Sunday. You never feel really bad during the week when you could get hold of your GP or gynaecologist. These things always happen on a Sunday. To make things worse, I’m supposed to fly to Germany tomorrow. There is no way I can fly in the state I’m in right now. I can’t even stay upright. I’m wondering whether to go to A&E when I remember that my gynaecologist actually gave me her email address at our last meeting. Could I send her an email on a Sunday? I don’t think I can, surely that is breaching some sort of rule of respect for the weekend privacy of doctors. Besides, what is she going to do anyway on a Sunday? After an internal dialogue that goes on and on for hours, I decide maybe she can see me as a private patient tomorrow and I’ll cancel my flight.

Dear Dr. Myer,

Sorry to disturb you on a Sunday, but I just don’t know what to do. I’m in really bad pain. Is it possible one my cysts has burst? I’m supposed to go to Germany tomorrow morning and I might be able to see my gynaecologist there. Is it safe to fly if a cyst has burst? Could you see me tomorrow and do an ultrasound to find out what happened? This is much worse than anything I’ve had before.

I do apologize for disturbing your Sunday!

Kind regards, Wenke

I get a reply within the hour:

Dear Wenke,

It’s half term next week and my ultrasound specialist is on holiday, so I would not be able to get a clear picture of what’s going on until the week after. It’s unlikely to be a burst cyst and even if it was, you should be ok to fly. If you want to book in for the week after next, please ring the hospital reception to make an appointment. I suggest you fly to Germany and try to get an ultrasound there, if you can. By the sound of it, this would be much quicker.

Best wishes, Catherine

I’ve lived in the UK for years, but as my grandmother died of cervical cancer I go for a gynecological check-up in Germany once a year rather than relying on the three year smear test offered on the NHS. Gynecologists in Germany tend to work in their own private practice, with a proper gynecological chair, ultrasound machines and everything one could possibly need at about a third of the price you’d pay privately in the UK, where to get the same examination you’d need three separate appointments: one with your gynecologist, a second with the sonographer and a third with the gynecologist again to get the results. Even privately this would take a few days or weeks. In Germany, it’s all done in one appointment, with you and the gynecologist looking at the ultrasound screen together and seeing “live” what’s going on.

I am able to get hold of my German gynecologist - as luck would have it, my dad has her mobile number as she belongs to the same horse-riding club as him. She agrees to squeeze me into her full schedule the next day and could see me in her lunch break. My pain has decreased enough to make the flight just about bearable, dosed up on both ibuprofen and paracetamol. I'm still incredibly worried and tense, which doesn't help.

I haven't seen Dr. Westermann since my official endo diagnosis. In fact my old gynecologist retired a couple of years ago and she bought the practice. As I live abroad, we haven't really had a chance to properly become acquainted. She seems to really like my dad, however, and is incredibly supportive. It turns out, she wrote her doctorate on endometriosis. That alone makes me feel better. She listens to my UK gynecologist's strategy of GnRH injections and then a possible hysterectomy quietly.

Then she looks me in the eye and says: “You know, you can manage endometriosis with nutrition. If you want my advice, have the injections for six months. It will give you time to make changes in your life. Under no circumstances have them longer than 6 months. They massively impact your body, especially your bone density further down the line. There are studies that show severe osteoporosis in women 20 years post hysterectomy. Unfortunately it's not the easy solution it may seem.

Use the time the GnRH injections buy you, to do some research and look into nutrition. My advice would be not to have a hysterectomy, if you can avoid it. It should really be your very last resort. If they take the ovaries out, you’d be put on HRT and at 34 you’re really too young for that. If they leave the ovaries in, they would still release hormones and you would most likely still experience endometriosis pain after the surgery, as the pockets of endometriosis cells outside the womb will still be there, reacting to the hormones exactly as they do now. In addition, you might open yourself up to a whole array of hysterectomy side effects that could be almost as unpleasant as your endometriosis. So you may just be swapping one lot of problems for another.”

I left gob smacked. Nutrition? How could something as simple as nutrition sort out my pain? I was told I needed a hysterectomy and possibly part of my bowel removed and now I am told I can simply avoid certain foods? While I'm incredibly grateful for Dr. Westerman's opinion and part of me almost does a tiny mental somersault at the prospect of hope, another part is skeptical. Surely if this was a solution, my UK doctor would have known about it? I mean, if endometriosis is an illness that affects one in ten women and a gynecologist specializes in women's health, they would know, right?

I start googling and come across a book by Dr. Dian Shepperson-Mills called “Endometriosis: A key to healing through nutrition.” That’s encouraging, clearly not just my German gynecologist is aware of a nutritional approach to endo, so there must be something to it. I order the book and it’s waiting for me as I get back to the UK.

Each month I go to see Robbie Williams and get my GNRH injections that give me breathing space to study my illness. I cannot tell you how liberating it feels to not have to use all your energy for pain management, but to actually use my recharged batteries to learn new stuff. Dian Shepperson-Mill’s book becomes my endo bible. I’m like a dog with a bone. If you suffer from endometriosis, are a bookworm like me, like getting to the bottom of things and want to understand what exactly is going on in your endo stricken body, then this is the book for you. It is quite scientific, it goes into the minutest detail and may not be for everyone. I decide to become my own guinea pig.

I cut out gluten, sugar and dairy. After 6 months of GnRH injections, I feel good enough to postpone the hysterectomy indefinitely. My gynecologist agrees to monitor me at regular intervals. When the injections stop, endo comes back with a vengeance. It's almost like it says: how dare you try to get rid of me. I'll show you who is boss!

But I have a newfound hope. And I have got enough knowledge now to carry on with my experiment. I know my enemy. That hope generates an incredible will to live and fight within me. I find local alternative practitioners to help. I build my own endometriosis war cabinet around me. My homeopath looks at my immune system and gives me mental and emotional support. My Chinese practitioner does acupuncture and prescribes the most foul smelling tea concoctions. My iridologist looks into my eyes and gives me my personal blueprint of health and as she also happens to be a nutritionist, she helps me sort out my dietary changes. My Bowen therapist helps release the tension I carry in every muscle due to the pain. I spend an absolute fortune on treatments and supplements but what price can you put on your health?

Slowly, month after month, I am regaining a little bit of my life. I am managing my endometriosis. I'm not healing, but I feel like I'm back in control. The first two days of my period are still extremely painful, but manageable with the highest dose of paracetamol and ibuprofen taken in 3-4 hour intervals. Using a vitamin B complex, Magnesium spray and painkillers, I manage. I tend to get my period on Thursdays, so decide to take Fridays off. At this stage, being able to be a mom to my son, a wife to my husband and earning a bit of money teaching business German part-time is all I aspire to. I resign myself to the fact that endometriosis will be part of me until menopause stops the release of estrogen, putting an end to my monthly periods and my pain.

Dr. Myer, my UK gynecologist, agrees to monitor me, but she is worried and tells me so every time I see her. She fears that my endo is secretly spreading inside and she still feels a hysterectomy is the safest way forward. While I can understand her point of view and her concerns, I am just not ready to go down that route.

Why? My husband and many of my friends ask me this constantly. Why am I so stubborn? Why don’t I just do what the doctor says? Why would I not at least go back on the contraceptive pill, which would most likely give some relief? Like doctor Myer, they are losing patience with me. For two days every month they helplessly witness my suffering: curled up on the sofa with a hot water bottle, on the highest dose of paracetamol and ibuprofen.

They love me. It hurts to see someone you love suffer, especially when there is nothing you can do to help them. I understand, that they can’t understand. And still, I cannot give in to the pressure everyone is putting on me. I am morphing into a lone wolf on a mission. I am swimming upstream, constantly on my own against everyone that cares for me. It would be so much easier to just turn around and float with the river, let the water of conformism carry me. But I can’t. Why?

There are effectively four reasons why.

Reason number one: My mum had a hysterectomy at 42, after years of suffering from very similar symptoms (although there wasn’t a diagnosable illness called endometriosis in those days). She subsequently struggled all her life to balance her hormone levels, feeling drained and exhausted as a result. She developed osteoporosis, possibly a result of the hysterectomy and hormone replacement therapy she received. In her sixties, she got diagnosed with thyroid cancer. A 2016 study found an increased risk of thyroid cancer in women who’d undergone hysterectomies, in most cases there were 15-20 years between the hysterectomy and the cancer, but there seemed to be a link. Unlike so many other women who blindly agree to hysterectomies as the proposed solution to endometriosis, I know thanks to my mum, that it isn’t the easy way out. There are life-changing implications that I would most likely face as a direct result of an irreversible hysterectomy. I seem to follow my mum’s pattern as I developed the illness in the first place, chances are that the consequences of the hysterotomy would be similar, too. (Please note that for some women, hysterectomy really helps and solves their problem.)

Reason number two: My father was diagnosed with stage IV colon cancer at the age of 54 and was left with a colostomy bag. Even the remotest possibility of anyone having to remove part of my bowel scares the shit out of me. I know what psychological implications a stoma has. I know that stomas sometimes come undone accidentally, leaving you covered in your own shit while out getting your supermarket shopping. I know that stomas have an automatic air release mechanism that means “farting” noises at any point in your day, regardless of whether you are in a public restaurant having a meal with friends or in a meeting with a client. While you can, of course, explain the situation beforehand, it is still incredibly embarrassing when it happens totally out of your control. I know what massive psychological trauma having to live with a stoma caused my dad. I know that most likely my operation would never result in me having to live like my dad, but there is no way I am going to take the risk. You just never know. However good a surgeon might be, things can always go wrong. No, thank you, I’d rather have a few days of pain every month.

Reason number three: During pregnancy with my son, I experienced some bleeding around week 20, mid-way through. I was admitted to hospital, but the baby seemed well and it was decided to leave further investigations until I had given birth. When I finally went for a check-up months later, pre-cancerous cells were discovered on my cervix. These were duly removed and I was given the “all clear”. Looking into the side effects of the contraceptive pill I had been on from 17 to 29, an increased risk of cervical cancer was on the list. With a grandmother who had died of cervical cancer, going back to taking the pill wasn’t an option for me anymore.

Reason number four: This is the one I can’t tell anybody about and it is probably the most important motivator for my stubbornness. As a thinking, reasoning human being, having grown up in an era that admires the scientific advances we have made in medicine, I feel I can’t tell anyone that my gut feeling tells me, I shouldn’t have the operation. Deep down, it just doesn’t feel right. Everything inside me cringes at the thought. Deep down, I am convinced I can win my endo fight without surgical intervention.

I know in my heart that there is another way out of this and just because I can’t yet see it, doesn’t mean it’s not there. My intuition is what gives me the courage and strength to keep swimming against the tide. This inner belief is so strong, I cannot ignore it (however much I sometimes wish I could). I keep this to myself. Following your heart and listening to your gut is not widely accepted in the world I live in. For now, my endometriosis doesn't seem to be getting any worse. That's all that counts. There is hope.

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