Endometriosis – A pain in life?

This post is about a health issue that affected me for many years.  Its’ effects carried on for the whole of my adult life.  I am at the point of living with it comfortably and peacefully, and thanks to a wonderful surgeon I had several years ago, I have a life that is livable. 

I  cannot ever forget how bad this was for me for 13 years, and how much of my life it shaped and dictated.  I am also very very aware that women are still struggling to get diagnosed, struggling to get decent consultants, and struggling to find surgeons that can make a difference.

Not everyone has the same problems with it, and not everyone has come across endometriosis.  I first was acquainted with the term as a 27 year old who had been suffering for many years with the effects of the time of the month.  It gradually became worse and worse, and for a long time, I was convinced that I was dying.  I sometimes wished I was dying so that the pain would disappear. 

It was  only when I changed doctors that I actually found out what I had that was affecting my career and life so badly.  Every time I had mentioned it, to three different doctors, I had been told to go home and take a paracetamol and more or less dismissed with a wave of the hand.  I got a new woman doctor who actually listened and sent me off for investigation which led me down the route of laparoscopy, laparotomy and excision which eventually ended up in my ovaries packing up due to the operations on them to remove chocolate cysts.

Throughout living with the disease which was travelling upwards in my body before I went into premature menopause, I struggled to keep my career going, try to get pregnant, go through 3 IVF cycles and 1 donor egg cycle.   It was a horrendous time in my life.

Due to the scarring from the operations, I now have adhesions behind my tummy button that mesh up my bowel loops, so the local endometriosis surgeon won’t consider going in for the hysterctomy that the fab surgeon I used to have (who went to Australia) said he would be able to do.   I have to live with that, and was struck off my local surgeons list as there was nothing more he could do for me. 

This is real pain I am talking about.  Not the kind of pain that most women suffer with periods which might give them a headache, or achy cramps in their abdomen or lower back.   I am talking about pain equivalent to the worst parts of labour, without any pain relief, and occurring at this level at least twice a month for several days on end.  The horrible part of severe endometriosis is that your cycles get shorter and shorter, and pain can become more and more frequent.

I am sure I can hear some people snorting in the background, and making their own assumptions about the disease that they think is not a disease.  

Let me tell you about endometriosis quickly.  Doctors are not really sure what causes it, but retrograde menstruation, hormone issues, or dioxins in the atmosphere have been touted as possibilities.  The only sure thing we know, is that in some women, for some reason, the menstrual blood backs out of the womb and into the abdomen. 

The blood deposits in the abdomen act as mini wombs, and when the next cycle sees the womb build up and break down, there is nowhere for the blood to go to.  It expands in its little mini womb, and begins to deposit around the abdomen as there is no external outlet for it to leave the body.  It can attach itself to organs, usually the womb and ovaries, but it can travel up ureters and move further up the body.

Normal menstrual cramps are achy, annoying and make you feel a bit sore and tuckered out.   Severe endometriosis pain (and new deposits of mild endometriosis pain) can have someone off their feet with the pain.  Imagine trying to get up and walk around in the throws of a new baby being born.

I am one of the lucky ones.  I was lucky enough to be operated on by Professor Ray Garry who used to work at the old WEL Foundation in Middlesbrough.  I was devastated that he didn’t manage to get the hysterectomy done before he left for Australia, as no-one else will do it.   Years into the menopause has meant that my endometriosis has calmed down year on year.

I can’t take HRT as it adds oestrogen to my body and the endometriosis starts up again.  I have many years too many in the menopause and will be at a  high risk of osteoporosis, but the worst of that pain has stopped.   I struggle with the effects of my feet, which is probably hormone related, but nobody seems to know.  I’ve been passed off as now having fibromyalgia which I doubt, but I am  happy to go with it, as the tablets I get help my feet.  I don’t have the classic signs of the fibro, but the doc is prescribing something that helps, so I can live with the potentially wrong diagnosis for the moment. 

What disappoints me from looking at the forums on endometriosis, and online sites, is that little seems to have changed.   So many women are still having to wait too long to be diagnosed, and don’t have access to experienced and sympathetic consultants and surgeons.  That is on top of the friends and family who believe there is nothing wrong with them.

I wish I could do more for the women who are coming through the endometriosis minefield, especially the ones who are suffering severe pain, but all I can do is pass where women can get some help and information from, and to ask people to take the pain of women who have endometriosis seriously.

The National Endometriosis Society that I knew of old has changed its public identity to Endometriosis UK.  When I first was diagnosed, there was nowhere online to talk to other women who were suffering.  That is no longer the case, and support groups and internet support is now everywhere.  

For anyone suffereing from endometriosis, the biggest thing you can do for yourself is to learn about your disease so that you know what your consultant is talking about.    You also need to fight for pain management if your pain is severe by showing your doctor and consultants your pain.

http://endometriosis-uk.org/

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Comments

  1. 32 pregnant says

    Yes you are right Adria. This is a problem that we can not say any one the problem and the pain is like this , but we to consult the gyn at the right time and taking care our health at that time.

  2. adriabold says

    I am now nearly 19 and will soon be having my second Laparoscopy to remove the Endometriosis that has grown back….I have been suffering with Endometriosis since I was 16. It is so hard to describe to other people what that pain is like. pain with endometriosis

  3. Michelle utterlyscrummy says

    I have endometriosis and PCOS. It took many years for me to be properly diagnosed and get appropriate treatment. I have had several laproscopies over the years and am hoping to have one last child before I’m done and can have a hysterectomy so I am no longer suffering. Thank you so much for writing an honest, informative and candid post on this issue.

    • Scottish Mum says

      Thanks. I think it is difficult to write about health issues online to some extent, but I do think that the only way we can help others is to talk about it. I am sorry that you are stil suffering. It’s a horrible disease that does not get enough publicity for the pain it causes, or the women and girls entering it would be able to ask their docs for help. I think the common gynae issues like these should be covered as part of living and growing for all young girls.

  4. Scottish Mum says

    Hiya = Thanks. I get really really frustrated that doctors have not moved forward on this in the last 20 years. My mum is PCOS, diabetes. All these things seem to be hormonal to some degree. I’ve had the comments re period pain many times over the years, to the point of someone even saying they a painkiller and then just went to work. I hear you. x

  5. says

    Powerful post!

    I can relate to much of this as I too have been diagnosed with (mild) Endometriosis and (quite bad) PCOS.

    It is something I’ve learned to live with and accept, but so many people know little about it.

    I was told it was unlikely I’d ever have children yet here I am writing while my two babies, (15 months and 3 months,) born within a year of each other (364 days actually) sleep upstairs.

    Thanks for sharing this, and for hopefully creating more awareness.

    It often upsets me when I talk about my condition(s) and someone says – yes I hate periods too.

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