Davina McCall I salute you.

Last night I watched a documentary on Perimenopause and Menopause. Five minutes after I began watching, I posted on Facebook urging my friends to watch it. I knew that it was going to help so many women.

Sex, Mind and Menopause was a documentary with Davina McCall aired on Channel 4. If you did not see it, I urge you to watch it on catch up whilst you still can. It will bring you an understanding of what women around you may be going through and may encourage a more empathic approach instead of just brushing off things which might seem out of character. It was incredibly informative, heartwarming and emotional at times. Not only did it give us the brutal facts, but it also gave hope to people. https://www.channel4.com/programmes/davina-mccall-sex-mind-and-the-menopause/on-demand/73406-001

After watching this documentary to its conclusion I couldn’t help but think What a total eye opener! Thank you Davina McCall for bringing this subject to the fore. Sharing her own experience of this made me see this presenter in a down to earth and relatable light. I suspect that this will be a day when women all over the UK are doing alot of research and thinking about what was shown. I have had several lightbulb moments, thinking about what was said. The neuroscientists who spoke made complete sense, the image of a 43 year old brain at perimenopause was shocking. Going through much of what was discussed myself and not knowing what the cause of these symptoms actually might be has been difficult. Yes, we all hear about menopause equalling hot sweats and decreased libido, but I had never heard of perimenopause until recently. My own personal suffering with three long term health issues can complicate things and as a consequence, we do not necessarily think outside of the box. I will freely admit that up until now I haven’t either. A new symptom is just put down to being something else that may or may not be part of an existing illness, whilst all the time our health and wellbeing is going downhill. After a full hysterectomy 13 years ago, I mistakenly thought I had been cured of Endometriosis, I went to the gynaecologist who was an Endometriosis specialist and in my eyes a magician six months later and he told me he could not find any more Endometriosis. Since I had all of my reproductive system removed, how could it be possible that I would get it any more? Oh how naive I was. Endometriosis is incurable I later found out and attaches itself to scar tissue, which I have plenty of as well as other organs in the body. I experienced all kinds of similar pain just in different places. It also affects the immune system long term and since it takes at least 7 years to diagnose, has a huge impact on the mental health aswell.

I began taking HRT via Estraderm patches, the day after my surgery. At 35 I did not want to have brittle bones, hot flushes etc and thankfully they seemed to agree with me. I did not suffer any noticeable side effects from them. My hysterectomy like many other people, rectified the cyclical symptoms, but to the detriment of other things, it was as though someone has flicked the switch on my libido almost overnight. In the early days, I just accepted that this was a response to major surgery and that it would return along with the healthy sex life we had. After a couple of years, I mentioned it to the Doctor and nothing was discussed further… No suggestions were made. It was assumed for the better quality of life following the surgery, sacrifices had been made. But I was not happy about this at all and it has over the years put a strain on our loving relationship.

But, back to this documentary…

What was a total eye-opener is that so many people feel that they have no one to talk to about this, in the days before social media, I am guessing even less was mentioned about what is actually a massive issue for a huge percentage of women. What a wonderful realisation that No, we are not all crazy after all.

To find out 13 years later that it is highly likely that a simple application of Testosterone gel might rectify the lacking libido, help clear the brain fog, the frustration, the fatigue, the lack of strength, insomnia and excruciating joint pain I have suffered over the past few years has left me reeling. I am also asking the question, why on earth was this never mentioned? Having had a medically induced menopause so long ago, my unquestioning acceptance of all these changes as being the norm, or something else is making me feel a little bit foolish. So this afternoon I have done some more research and found so many more women like me who have also had medically induced menopause from Endometriosis and have eventually benefitted from the addition of Testosterone gel to their daily routine.

So, today I, like many more women in their 40’s I suspect, have contacted my own doctor. I have an appointment in a couple of weeks time, with a female doctor who I can discuss candidly what has been going wrong. Who knows but I suspect that many of the symptoms of Fibromyalgia may be reduced if this treatment is offered and I am looking forward to getting some answers. It has occurred to me though, that the percentage of Fibromyalgia symptoms in women of perimenopausal and menopausal age may be drastically reduced by simply getting their hormone levels right for them.

The statistics for suicide in women of menopausal age are frightening and should not be ignored. If I can urge any women over 30 who are affected by sudden changes in their mental or physical health to discuss this with someone, anyone actually it might just save a few lives. But if nothing else, it will make you realise that there are others who have gone through this too and who are prepared to help you. Do not suffer alone.

I had never heard of “Body identical” Estrogen until last night, I for one will be asking far more questions about this going forward. It’s a learning curve. Medical science is ever changing, what suited 13 years ago may not suit so well now. My body has changed so much over that time why would I not think that metabolism had stood still. Time certainly hasn’t!

A Familiar Pain

As I read posts here and there about women going through the endless quest for a child, I cannot help but feel their pain and the suffering they are going through. All those memories suddenly returning of being hopeful that this was the month when my period would not appear early and the tightness in my abdomen and swollen stomach would mean something other than an Endometriosis flare up. My heart goes out to these ladies every time that I read of their torture. There have been two such posts that have popped up on my news feed this week. I hope that those ladies do get their wish and are able to bring precious souls to the universe. I know that if they are lucky enough to do so that they will shower such love upon their miracle babies and praise the IVF treatments they put themselves through to get that longed for baby.

I do not have an IVF journey to share instead I tried everything that the Drs suggested just to try and be pain free and it wore me out. My partner had not expressed a wish for more children so when I was told that we would be eligible for one course on the NHS at a time when I could not have felt so ill equipped to deal with a pregnancy we had a big talk. He could see that I was ill and he told me that from his point of view he had everything he wanted, he did not need a child to be the icing on the cake. He was happy with me so I wasn’t under any pressure to bear children. I thought that when the Doctors told me at 17 that I wouldn’t have children had really done a number on me and I hoped that one day I would just prove them wrong. Alas it wasn’t to be. So as for IVF I would give up my chance and not pursue that route. It felt as though I would be trying to force nature and perhaps someone else would give their child better chances that I could not. You had to both want it so badly that you would go through everything to get there. I thought that I would have made a good parent, others told me that I would. I loved children and in the early adult years was everybody’s babysitter, a nanny and honorary Auntie to so many. There were a few occasions when I thought that I might be pregnant again. Periods were late, just by a few weeks which never normally happened, but then Mother Nature would play her cruel trick once again and I would be left quietly devastated.

I settled into the life we had and the pain of a condition along with multiple surgeries over the years and prayed a lot. That if it were right we would be blessed with a child and if not, then the pain would go away. Over time I asked about more permanent solutions since my symptoms were clearly cyclical and getting worse I was finally given the green light on a hysterectomy having fought to have one for several years. I was told that they didn’t want to do it as I was too young and had no children. They said it would be irreversible and force a medical menopause. I argued that having been told I would never bear children at 17 what were they waiting for, why prolong it any longer? I could have had a life and been pain free before now! Finally someone listened to me. A week before my 35th birthday I was scheduled for a hysterectomy and I thought that my Endo problems would be over. In my mind it really was a case of New Year New Me! The one thing that wasn’t explained was that even that could not heal the condition as it is incurable. Yes it could slow it down ease some of the symptoms but it could come back, as I would find out.

I was in surgery for several hours, they cut me about a lot and as my partner paced the hospital in the snow smoking and worrying about me, as they stopped the haemorrhaging he was glad that I had made it through. As I healed I felt that my life was truly about to begin. Full of hope, ambition and excitement for what might happen next. A healthy and happy future together pain free.

For a few years, I championed the work of the surgeon. I happily recommend him now to other ladies who need to see a specialist for the condition since he is the only Dr I have met who understands it. He had after all enabled my life to start given us me back. There was an Endometriosis support group at the hospital and I used to go there after the operation. I even did a talk and told my story there once. My partner was so proud of me. Prior to the surgery I had often had thoughts that I shouldn’t be here anymore, Endometriosis can do that to a girl,  it was usually when my hormones fluctuated uncontrollably. But then I thought that some people might miss me and they shouldn’t have to. My hormones had a lot to answer for!  It was a huge step to be able to speak there in public at that group and when people came up to me and told me that I inspired them it made the stage fright worthwhile.

I threw myself into my work, getting on with our lives together and for some time felt no pain. I went on HRT within 24 hours of the operation and have remained on this since. Opting for patches rather than tablets due to suffering with irritable bowel for all these years I did not wish to lose the benefit of the HRT. About 2 years went by I think before I started to get those familiar dragging pains back again and I remember asking how it were possible that you could get the same pain when you no longer had the equipment. No-one seemed to be able to give me a straight answer and by then I had been signed off as healthy by the gynaecologist. I also received a letter saying that I was no longer required for smear test screening since I no longer had my ovaries. (Yes they actually wrote that! ) I began to research how on earth I could be getting Endo pain again when I’d had a hysterectomy. In my naïveté I had assumed that that was it and I would be cured. I got on the hysterectomy association website again and checked the forums and to my horror my fears were confirmed. There is no cure! 

In all the appointments after a diagnosis which on average takes seven years, I did not ask. I merely accepted it when I was told by the consultant that “There is no sign of Endometriosis” after the operation at the time that sentence had me doubting my sanity more than I ever had before. I asked my partner had I imagined it all these years and gone through all that uneccessarily? Had the other Doctors got it wrong then? No, he reassured me that it simply meant that he had removed all traces that he could find at the time. So after that I was discharged from his clinic.

The Endo pain comes and goes, in times of stress it flares up along with the irritable bowel and my stomach swells making me look as though I’m pregnant, sometimes adding several dress sizes to my body overnight. It causes pain in the strangest of places and I have no idea whether it requires further surgery. After all, I wonder what else could they take away? Sometimes it is a chronic pain which doubles me up making me shake. Leaving me wanting me to hide away all I want to do is curl up and sleep for days. Other times I get by with rest and painkillers and there are times it stops me doing things that I would love to do. It has had a devastating effect on my sex life. I am not alone, so many other Endometriosis sufferers go through this. Far from giving me the freedom to enjoy sex more which I had hoped for, the hysterectomy was like flicking a switch on my libido plunging it into darkness  where I often can’t find the switch to turn it back on again. It’s devastating when two people who have always found each other the best thing since sliced bread with great chemistry are suddenly just not being turned on so much. We both felt cheated by this since no-one had forewarned either of us. Over the years since then our relationship has shifted and Thankfully we are strong enough to handle the ups and downs and can still light each other’s fires even though it may not be as often as before.

He told me years ago that if we did not have children of our own then we would raise puppies. Our second one since then has joined our family taking the place of the first one who left a gaping hole when we lost him earlier this year. For me that loss was like the miscarriage of my youth all over again. Having your baby suddenly gone can tear you apart as well as open up old scars. It took a while but we needed that unconditional love back in our lives so we lavish so much love upon the new puppy and he is happy here.

Whatever your circumstances. There are some wonderful support groups, on Facebook and other forums now. When I first went through this before my illness was diagnosed I was reliant upon libraries and a disinterested GP who was happy to palm me off, as is so often the case. I knew absolutely no-one else who had these symptoms so felt that there was no one to ask. Most of all you need to know that you are not alone. As a statistic one in 10 women suffer with Endometriosis but it is natural to doubt your own mind when your body is doing unexplained things to you. If you have chronic abdominal pain, or just that something is out of the ordinary with your body and it worries you then please ask your GP. Do your research via these forums and get a second or even third opinion. The social network is a good place to start but you do need to get it checked out by a professional.

If you are UK based and diagnosed or think you may be living with this condition then please take a look at the attached links Endometriosis.Org – Facts

Should you wish to connect with others in the UK please go to Endometriosis U.K. But other groups and locations are available worldwide.  Endometriosis Sisters Support Group – Facebook is  a place where you will find so many people who will inspire, encourage and advise you, based on their own experiences of dealing with this condition. You will also find lots of research articles via Bloomin Uterus Blog

You do not have to face this alone.