Ask me about my uterus…

posted in: SuffolkUltraMum | 0

Are you squirming a bit now? Why is that – it’s an organ pretty much like any other organ in the body but as a woman outside pregnancy we just don’t talk about it.

I have a “dysfunctional” uterus. Officially, my uterus is messed up. The trouble women have when it comes to the health of our reproductive organs is that we expect to experience a certain degree of pain, that is a normal part of being a woman. Well actually it’s not. Furthermore, because pain is considered a normal part of womanhood when that pain becomes severe, to the point that it stops you functioning as normal it is not taken seriously, in fact quite the opposite, professionals even question your mental health rather than just listen to the symptoms you are experiencing and investigating the physical issues you are describing.

I discovered, on the morning of my 40th Birthday, that I needed a full hysterectomy – that this was the only definitive and effective treatment plan to rid me of the symptoms which I have been suffering from and have been trivialised by medical professionals and colleagues for years. It was not the news that I was expecting and even though I am not planning on having any more children it has been an emotional blow. My life is invested in supporting women through the antenatal and postnatal period and the sense of loss I felt when I thought about being defunct in my ability to reproduce was huge. The only thing I can liken it to is a running coach finding out they will lose a leg and having to learn how to run again. One thing is for certain, I will learn to metaphorically “run” again despite being uterus free.

On the 4th of February I will lose my uterus & my cervix and I hope to keep my ovaries to avoid going through an early menopause, but the facts are I won’t know whether that is possible until I wake up from the surgery. It is thought that I have a condition called Adenomyosis and possibly Endometriosis as well although that is less likely.

One in ten women will be diagnosed with these conditions during their lifetimes. Both are misunderstood and on average it takes over seven years to reach a definitive diagnosis – so actually I am lucky, only dealing with these symptoms for four years.

So, what is Adenomyosis? Adenomyosis is a condition where the cells that normally line the uterus start to grow into the muscular uterine wall. It is not to be confused with Endometriosis (although the two can co-exist) where the cells grown outside the uterine wall and can fuse the pelvic organs together. Adenomyosis is common in women aged between 40 – 50 who have had multiple pregnancies and can only be officially diagnosed via laparoscopic surgery and a biopsy. Ultra sound scans and MRI scans can not give a diagnosis, although some clinicians may advise otherwise.

The symptoms are generalised which again makes the condition hard to diagnose, they include:

Extremely heavy periods – often involving the loss of clotted blood

Extreme pain during your period – pain that cannot be controlled by over the counter painkillers and can lead to vomiting and reduced mobility

Irregular or prolonged periods

Pain during sex, UTI like pain when passing urine and pain during bowel movements

An enlarged uterus and chronic pelvic pain. This can also contribute to other complication such as uterine prolapse.

Chronic pain affects you in ways that only those that have experienced it can possibly understand. It is chronic – that means you are in pain every day, all the time in some form or other, there are times when it is less bad but you are none the less still in pain. Yet you learn to smile through it and act normally because that is your normal. Fatigue and emotional health also come into play because your body is constantly fighting a monster inside. We deal with it the best we can and when we ask a loved one for help or say “I am really not well” today and they turn a blind eye that is when the isolation kicks in. It is even worse when people suggest that you are being a hypochondriac or that your pain is not real simply because you are yet to find an official diagnosis. In the four years I have been hassling GP’s and asking for referrals I have been told my symptoms are due to an early menopause, adrenal fatigue, depression and perhaps they don’t exist at all. (Maybe I imagine the bleeding that is so heavy I nearly collapsed while taking an antenatal class and had to be rescued by another teacher as I could not stand up.) The fact is that if you have a feminine reproductive issue you have to fight to be heard and taken seriously.

Chronic pain is very lonely, it can stop you taking part in your normal hobbies, reduces your ability to socialise. All the symptoms associated with Adenomyosis stem from internal inflammation which can be managed to an extent via lifestyle choices – there are also times when flare ups can be so violent and so out of control you are left in crippling pain unable to leave your house.

Adenomyosis and Endometriosis in themselves do not always cause infertility – this only affects about 30% of women with either condition, in fact Adenomyosis is more common in women who have had children. Hysterectomy is not the only course of treatment and over the years I have tried pretty much everything else that is less invasive, with the goal of reducing the symptoms by reducing the number of periods I have. None have worked, and I am now in a situation where I often cannot teach or run because I need to sit with a hot water bottle stuffed down my trousers. There are even days when I cannot contemplate wearing jeans because the pressure on my distended stomach is too intense.

With all this in mind I am looking forward and positive about breaking up with my uterus, although there is a certain sense of loss which I think must be entirely normal when faced with losing a part of your body that has meant so much. It has given me three incredible children and it is now diseased and inhibiting my life. I briefly made the mistake of following some women on Instagram who had undergone hysterectomies and was shocked about the level of negativity that was evident. I may lack a uterus and a cervix in the future, but I see no reason now why that should reduce my femininity or be a loss of my female power.

I’m having to take quite a few months out of teaching while I recover and heal, Suffolk Babies has been such a huge part of my life for so long the thought of not being omnipresent has terrified me but then an arrow can only be shot by pulling it backward and when life is dragging you back with difficulties, it means it is going to launch you into something great.

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