Endometriosis- My Struggle.

Had the most perfect day today. Having recovered from Covid19- just knowing that we are now in Boris Johnson’s ‘Herd Immunity’ group has been a relief to my family. The anxiety of not knowing when Covid would hit us, and also how we would cope with it, is no longer an issue. We have overcome it.

And the new incentive ‘Eat out to Help Out’- where we get 50% off our meals (*subject to terms and conditions*) means that Monday -Wednesdays are the new weekends for us. (Thanks Boris) And so I spent the day doing nothing and enjoyed the evening eating out with the family……

…..and then it hit me, a walloping pain in my stomach, my back seized up and my internal organs felt tight, my face flushed up and I had a sickly feeling of wanting to throw up…… all at the time of starting our family movie for the evening…… This people is my world of Endometriosis.…

The hubby gets it, he has seen me suffer for the past 10 years, explaining to my boys is a lot more harder (is that a cultural thing?) or is that because generally not many people want to understand what Endometriosis is, and would rather call it a ‘Heavy period?’…… so I put my hand to my head, (why do we do that? ) and say i’m really tired I need to sleep early and head off upstairs. …….Family time gone for this week…..

Although there are 176 million women who suffer from Endometriosis throughout the world, the illness is still so uncommon, and keep in mind that these 176 million women are diagnosed, and it takes 7-10 years on average to diagnose Endometriosis so the figures are not even reliable. They are far higher……. yet if you were to speak to a neighbour or a friend 9 times out of 10 they would not have a clue or put it down to ‘Heavy period’ and ‘Low pain threshold’

What makes thing worse is in our community, any illness to do with the reproductive organs are seen in a negative light and considered a *taboo*

The Endometriosis Society of India estimates that 25 million Indian women suffer from this condition. And yet, it is rarely spoken about and seldom understood, possibly because of taboos around menstruation.

Right So………What is Endometriosis?

Endometriosis is a long-term condition where tissues similar to the lining of the womb grows in other/wrong places, like in the ovaries, vagina, buttocks, Fallopian tubes- basically around the reproductive area of a women’s body. This ends up causing a lot of discomfort every month when its time for the dreaded monthly’s, because the blood flow now doesn’t follow the route it is sopposed to, therefore causing inflammation and discomfort aswell as scarring and damaging more tissues inside the body. This then ends up as severe stomach cramps, menorrhagia, severe back pain, feeling nausea’s and sick, either a case of diarrhoea or constipation, and severe pain during intercourse.

It is not known what causes this, but different doctors have suggested different things, i.e genetics, low immune system, and some have found common cases after a C-section. However none of these are solid findings.

In terms of treatment, their are only 2 options: Pain killers or Surgery. Two types of surgery can be offered depending on how severe the case is and the context of the surgery. For the ones who are trying for a child and the milder yet uncomfortable pain- Laparoscopic surgery is offered which involves the removal of endometrial tissues. However this is not a permanent solution and usually within 5 years the fibres tend to come back. For the more severe cases (where Laporoscopy has not worked) a ‘Hysterectomy’ can be approved.

Endometriosis can have a huge impact on some women and can lead to feelings of depression and loneliness because of the changes in hormones. I have managed with the pain for up to 10 years and have avoided surgery. I was suggested a ‘hysterectomy’ by my doctor, but I was only in my late 20’s and had no real idea if I wanted more children or not at that time, and also dealing with the side effects at such a young age…. it took me a while but I decided against it. Instead I went for the alternative solutions to medical care. I go for cupping, homeopathy, and acupuncture and it actually works well for me.

Its only now that I have realised that I am not the only one. Endometriosis is more common than I actually thought, and also its a hidden illness. Women generally don’t go to doctors for issues in the private areas because of the uncomfortable nature. It took me a while to be fully comfortable with stating exactly what I was going through, and that also because it was affecting my relationship with my partner, and I just needed to know what was wrong with me.

I have struggled with Endometriosis since after the birth of my second child. ( I have had 2 emergency C-sections) I was lucky that I have 2 boys, but their is a stigma associated with Endometriosis and I need to clear up- 70% of women who have Endometriosis do go on to have children, “Endometriosis does not mean you are infertile! It just means that some women have a harder time becoming pregnant.”

Endometriosis can lead to other medical issues too. I suffer for menorrhagia, and it can be bad, really bad……. I have had days where I have leaked to a point it looks like a murder scene, I sometimes even wake up to a fully bloodied bed……and I have no control over this. I was off from work for half of the year in 2 consecutive years because of the menorrhagia. It was so difficult to explain to male managers what I was going through, to be honest the females were not much better. Honestly sometimes I believe we women are our own worst enemy. We don’t make it easy for each other. With the help of the Doctors notes, and the Trade Union my job was kept secure.

As well as the Menorrhagia, I also had periods where I have suffered from Vaginismus. (Something else that cannot be easily discussed in the community and has negative associations. Talk about luck!). Both these had a real impact on my relationship as can be appreciated. I was very young and naive at the time, so instead of actually finding out more, and talking to people I went into a sort of unconsciousness. I stopped socialising, I stopped talking to friends and family, I was in my own bubble pushing people away. I was embarrassed. I felt ashamed. This was a hard time as I probably have never felt so alone, and talking about the menorrhagia and vaginimus was hard as people generally in the community consider it to be a ‘taboo’ subject, or said that “its normal to have period pain” . And the ones that tried to empathise just ‘didn’t get it’…. How could they? It takes the doctors 8 years to diagnose us, they dismiss it as ‘Period pain’ most of the time…….I had to rely on good old google to find my own understanding of what my body was going through. (I do need to advise that Google is not the best of places, but on this occasion it helped me to understand myself and my body a lot more.)

We really need to make more of an effort to break down these boundaries, to break down the walls. And although I said that this is something we suffer from because of the narrow-mindedness of the Indian community, it is far more wider than that. Recently in the Guardian i saw this article:

It made me realise the problem is far bigger, how a person can do a study “Rating how attractive women with Endometriosis are” really left me speechless. This is not a narrow-minded Indian problem, this is a overall, all round problem, that we are still facing in 2020. How does this study help me? How does it help my endometriosis? All resources, money, time spent on this study could have been put to better use.

Its just so frustrating that we have to go through the trauma of this, and then people are out there to ridicule us at the same time.

I’ve managed to accept that I have this condition, I have found my own ways of living with it, and treating it, all of which are the alternatives to medicine because I am not a fan of pumping my body with drugs, or even cutting it open, and dealing with the side-effects. And I must say that the awareness of Endometriosis is improving, yet there is a huge hurdle still in front of us. I think I can speak for all the ladies who suffer from Endometriosis when I say “We are strong, We are resilient, We are not asking for a miracle. All we ask for is a bit of compassion and emphathy. Thats all.

Do you suffer from Endometriosis? How are you coping and helping yourself? Have you been for surgery? Has that helped? I would love to know your thoughts and discuss further.

Suffer from PICA? Here is my story.

Love and Regards

M11bna

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