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Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (9)


In some village near Huddersfield I finally find myself sitting opposite a doctor who I feel totally gets what I’m going through and understands my illness better than anyone I ever met. For a hefty consultation fee, he spends 90 Minutes with me, meticulously explaining endometriosis and why he thinks the conventional approaches of hysterectomy or lasering only bring short term relief but are no long-term solution. We look at images, he draws and sketches. Everything he says makes total sense. He shows me statistics, success rates that should be called failure rates (65% of endo related hysterectomy patients experience symptoms again within two to three years!) and explains what he does instead.

Dr. Singh (name changed) was one of the first NHS surgeons to introduce an operation called peritoneal excision in the UK, a procedure developed by a German surgeon called Marc Possover in the 1990s. He explains that this excision surgery would be removing the first layer of skin from inside you. This skin layer is called the peritoneum and is a membrane that lines the abdominal cavity, including the intro-abdominal organs. The peritoneum contains the endometriosis tissue. By practically skinning you from the inside, there is a much better chance of removing all the endometriosis cells, including those a surgeon cannot yet see that are already implanted though. It is a time consuming operation, as you have to be incredibly precise and careful, removing this skin layer off the major organs like the bowel, which can be risky if not done by an excision expert.

He looks at my latest MRI scan and report, and at all my doctors and scan reports I have brought along and says:

“You know, we divide endometriosis into four stages of severity: stage I, II, III and IV. You have stage four, the worst stage we diagnose. Now imagine a scale of one to ten for just the stage IV endometriosis patients, with one being a mild stage IV and ten being the worst case scenario. On that scale, you would be a ten.”

I’m not even shocked. I knew I was in a bad state, even though I had tried desperately to not face the truth. In a way, I’m relieved someone finally sees that there is something wrong with me, that I was right and that I am not a wimp and a hypochondriac. Equally it dawns on me that getting this healed will be no walk in the park.

He explains that because of the severity of my case, two operations would be necessary. The first one would take about 5-6 hours and would excise the ovaries and uterus, which have completely fused together with the endometriosis tissue. The second operation would be a month or so later and would last about 10 hours, excising the rest of my peritoneum. He has retired from the NHS, so only operates privately and the cost for both operations together would be about thirty five thousand pounds. My heart drops. But I also know that if I did agree to surgery, it would have to be excision and he would be the one I would want to have it with. I totally trust him.

He looks at me very kindly, but seriously and says:

“You know, this operation is being done elsewhere, too. I am not the only surgeon doing it. There are endometriosis centers all over the country that often offer this type of surgery. It’s usually done by a team of surgeons rather than just one person, which means less time under anesthetic. Traditionally, there would be a gynecological surgeon, a bowel surgeon and an urologist working together, each dealing with their area of expertise. It just so happens that I do all of it myself and because of that you would need two operations, as I cannot concentrate for 15 hours at the level of precision required.”

“There are endometriosis centers all over the country?”

“Yes, I am sure there is one in Birmingham. So you might want to have a look at your options first. I’m a long way from your home. Don’t make any rash decisions, do some research first.”

I do love this guy. He is so genuine and so honestly interested in my welfare, I would like to wrap him up and take him home with me. I thank him and leaving his office I feel more positive than I have in years. However much surgery felt like a complete no go to me up to this point, I can imagine agreeing to this peritoneal excision. It makes total sense to me.

On my way home on the train, I mull over everything I have learned. I cannot believe that neither my GP nor my gynecologist have ever mentioned the existence of endometriosis centers. A quick online search reveals there is an Endometriosis clinic in Birmingham, about 30 minutes from where I live and the excision specialist there trained with Dr. Possover in Germany. How are GPs or gynecologists not aware of this? The clinic is private. That probably explains why nobody in the NHS system has ever mentioned this. Although I still believe they should. I'm a big believer in making informed decisions and looking at all my options. Precision surgery seems to not be offered widely on the NHS. There are, however, hospitals even on the NHS that have excision specialists.

When I get back home, I make an appointment at the Birmingham Endometriosis Clinic immediately. How did I not find this in my research before? But I suppose if nobody tells you about peritoneal excision surgery, you wouldn’t know what to research. I think, there is much more awareness around endometriosis and excision today than there was back then.

It is February when I return from Huddersfield, my appointment in Birmingham is in April. Despite all these promising findings and me coming to terms with the fact that surgery might after all these years of fighting it be my only option, I cannot ignore this feeling in my gut that wants to go to Germany to try the Budwig Clinic. Knowing that excision surgery would cost thirty five thousand pounds makes the ten thousand Euros it would cost to go to the 3E center near Stuttgart sound like a complete bargain.

During March, my mind rattles away constantly weighing up my options. Even if my private health insurance did pay (which is unlikely), would I rather have surgery, just because it doesn’t cost me anything? The fee for the German clinic would have to come out of my pocket. Surely who pays should be irrelevant. This cannot be the right way of looking at it. There is a cost attached to both paths, whose pocket the money comes out of should not influence my decision. The Budwig path is cheaper and (most importantly) my gut says that this is the way to go. Surgery always carries risks. The 3E centre has no side effects whatsoever. I would love to at least try Germany.

But what if the 3E cancer protocol doesn't work? Excision surgery seems to have really good results. The experts at the 3E centre have never had a patient with endometriosis. They treat cancer patients. I am completely relying on the study that links cancer and endo via the Warburg effect. It's a massive risk, a total experiment. On the other hand, if it doesn’t work, the option of surgery is always there later. I don't know what to do. Day after day, I'm debating my options, going round in circles. It still feels extremely uncomfortable to me to justify spending this sort of money on my health.

While I am trying to come to a conclusion, the weeks pass. It's April and I'm still waiting for some sort of sign to tell me what option I should choose. My mum phones. My parents have just split up after 45 years of marriage. My mum sold our family home and both my parents have downsized. I cannot believe the words that I hear through the receiver:

“Well, I was thinking that instead of you and your brother inheriting whatever I have when I am dead, I thought, I would like to give you both fifteen thousand Euros now. After all, I won't need all the money from the house sale, I get a good pension. This way, I can at least enjoy watching you spend it. What is the point of waiting till I am dead.”

“Wow! Are you sure?”

I’m getting super excited! It is like this is the sign I've been waiting for. The universe is telling me what to do. The money is not enough for excision, but it’s more than enough for the Budwig Clinic.

“Mum. Would you mind if I used the money to go to the Budwig Centre near Stuttgart? I would really love to try if this Budwig stuff works for my endometriosis. I just have this feeling it might. I cannot explain why. It would totally be taking a risk. But I get this really excited feeling in my tummy when I think of going there."

“Darling, it’s your money. I will put it into your account this week and then it’s up to you what you do with it. If I know it helps you, what better present could there be for me than to watch you heal.”

“Oh mum, I love you! Thank you! Thank you! Thank you!”

“You know, if you do go to Germany for a month, I can come and look after Joshua and Richard. You know: cook for them, do the washing. If it helps...”

“Oh mum, that would be just amazing! Let me ring the Budwig Centre and find out how it would work.”

I ring the 3E center immediately, my heart is beating fast. The month of May is fully booked but they have a space in their June intake. This actually works perfectly as it gives me almost six weeks to organise everything at home, and to book flights for me and my mum. I am super excited! My gut feeling is telling me "this is it"! Might this be the answer I have been looking for?

When my appointment at the endometriosis clinic in Birmingham comes along, I decide to still go. It can't hurt to meet the consultant there, see what experience he has and whether excision surgery in Birmingham is a possibility. I come away feeling that this could be a possible plan B. The consultant trained with Dr Passover in Germany, seems to know what he is doing and would operate with a team of three other surgeons, all sharing the excision work load. It would all be done as one operation, so only one anesthetic.

I tell him about my plan to go to Germany and try the Budwig approach first, we agree that should this not work, I would get back to him to arrange excision surgery. I am full of hope and the dietary changes I started to make in February seem to already be having a positive effect. I'm less constipated, less bloated and have a little more energy, even though the pain is still bad for almost two weeks every month.

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Inspirational truly

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