It was great news that Endometriosis has received much needed publicity and support from the UK Government this recently.
This was urgently needed for the many women who experience this debilitating disease.
I would like to bring to people’s attention a disease that goes along with endometriosis, which is Adenomyosis. Little is known or discussed about this condition. Many doctors are unaware or know how to treat this disease.
Symptoms worsen over time and many women have no symptoms.
Causes of Adenomyosis:
- Genetic / hereditary
- Damage from uterine surgery – examples of uterine surgery include a D&C (dilation and curette) or c-section
- A fault occurring when your uterus was forming in utero.
I was diagnosed with Adenomyosis just before my early menopause diagnosis. I had never heard of this condition before only Endometriosis.
The physical symptoms were explained but I was not really given the correct care that I should have received at that time. The condition then seemed to disappear and was not causing any alarm bells. As I was in early menopause and I genuinely believed that this disease had seized due to my hormones being non existent. I have since discovered this year during the first lockdown, Adenomyosis does not disappear it has moments of flare ups.
April of this year I had to visit to A&E during the first lockdown with regards to my hormones!! This lockdown I will be having a operation to find out what is happening to my womb.
It was incredibly painful, traumatic and it came all of a sudden and was a big shock it really derailed me, physically and emotionally.
After trying various forms of HRT, last year I was fitted with a HRT implant. It appeared to be working for a short time.
I had taken a break from HRT to reset my body as advised by my Consultant.
This was manageable, albeit with some minor symptoms. It was just before the time that the first lockdown arrived that my insomnia and various other menopause symptoms reappeared. It was agreed that I should start with some HRT again. A regime of patches and a new progesterone that I had not tried before called Provera.
I then started with HRT and all seemed well, I could feel some improvement.
I felt good and I could feel a difference to my overall wellbeing.
Everything appeared normal, the spotting had stopped. After taking the progesterone, there was no bleeding. I simply put this down to having had so much spotting of blood previously that there was going to be no bleed caused by the progesterone for the month of April 2020.
A week or so after taking Provera, I suddenly became very cold, I could not get warm and became white in colour. The following day I was extremely tired and feeling out of sorts, not myself, but I put this down to the current lockdown environment of being stuck at home and the stress affecting me.
I was awoken during the early hours of the following morning with the most excruciating pain along the right side of my body that radiated down my right leg. The pain came in a crescendo of waves and was making me feel physically sick. I immediately took strong painkillers to ease the pain. This took some time to work and I then felt ok to carry on with my day as usual.
By mid morning around 11am I was unable to stand, talk or think the pain again came in waves of incredible pain. I called my Doctor to ask what was happening to me? I had never experienced so much pain and the bleeding which had now started was becoming very heavy.
My Doctor arranged painkillers and medication to help me with the pain and bleeding. I was exhausted and weak, I could not think straight, concentrate or move around. I remained in bed for three days. I was totally bed ridden by this sudden traumatic pain and heavy bleeding.
After four days the bleeding subsided as did the pain and I was starting to feel somewhat better. Later that day during a phone call to a friend, I became very teary and emotional. Very sudden and unlike me? After our conversation ended I stood up from the floor and there in front of me was a puddle of blood on the floor. I had started to bleed and had soaked through my underwear, sanitary ware and clothes.
I immediately went to the bathroom to change, at this stage I passed a large clot which then put me into a state of shock. What was happening to me?
Thankfully my friend called be back to check in on me as it was very unlike me to get so teary. Once I told her what had happened she told me to call 111 straight away.
After talking to the Nurse during my phone call with 111 I was advised to go straight to my local A&E dept. I could not make sense of what was happening to me at all. I was coping ok the best that I could considering lockdown and in the midst of the pandemic. How could my hormones be doing this to me now?
I felt so dreadful that I knew I had to go to hospital to be checked over. It was a very strange journey as I was not sure if I was going to be kept in hospital, if I needed an operation if I would come out of hospital? What if I caught coronavirus? How could my body be doing this to me at this time.
Management has been in the form of changing my diet to a plant base lifestyle and with a huge detox of products, deodorant, toothpaste, shower gel and hair products. No caffeine since May!
Self care and listening to my body. Thankfully no more pain as before but the bleeding still is present and can be so tiring.
I gave up alcohol for 6 weeks during the summer which helped and now I only drink one or two glasses of wine during the weekend. Which is nothing that excessive. Sugar and processed carbs were the trickiest to give up.
I also made a decision to stop my HRT as I noticed there was a cycle of pain, then bleeding and as soon as I stopped with HRT the pain eased. mixture of diet and lifestyle, At present the pain has not returned, but I know now what to expect and what to do.
I have found a very helpful Facebook Groups of a wide range of adenomyosis fighters and endometriosis warriors who are all facing their own battle daily with these chronic diseases.
I have also discovered a fantastic surgeon who is dedicated and committed to helping women with Adenomyosis and Endometriosis, he is based in New York. Dr Vidali can be reached through social media and he has a You Tube channel, which I have added his video below for you to watch and discover more about the illness and what treatments are available.
I would like to raise more awareness for women to gain the correct treatment and support to help with being diagnosed with Adenomyosis.
Symptoms as a result of having adenomyosis may include:
- Low iron and anaemia
- Severe menstruation cramps
- abdominal pain
- lower back pain
- pain during intercourse
- pelvic pain
- pain radiating down legs
- pains/aches muscles
- abodiminal pressure
- enlarged uterus
- ovulation pain
- heavy menstrual bleeding
- prolonged menstrual bleeding
- blood clots
- spotting between periods
- difficulties passing urine
- passing urine frequently
- sudden urge to urinate
- irregular bowel movement
- painful bowel movements
- mood swings
- low quality of life
Some women may experience all symptoms or a variation. Endometriosis, adhesions and fibroids may also be present with adenomyosis. Ensure that you are checked for these conditions if you suspect you may have Adenomyosis.
Treatment for Adenomyosis –
Progesterone releasing Intrauterine device IUD – Mirena – thinning of the endometrium. A reduction in the size of the uterus. Reducing bleeding and pain during intercourse.
GnRH – an artifical hormone used to prevent natural ovulation. Thinning of the endometrium, a reduction in size of the uterus. Creating a temporary menopause and stopping periods.
Hysterectomy – complete removal of the uterus and adenomyosis.
PeriMenoPost last Sunday evening joined Endometriosis South Coast, Founder Jodie Hughes for a Facebook LIVE conversation surrounding endometriosis and adenomyosis. Head over to our Facebook page to watch.https://www.facebook.com/Perimenopost
PeriMenoPost is not medically trained, please seek medical expert help if you are suffering from any of the above symptoms.Credit – Dr Vidali – @endometriosis_surgeon Instagram / @Drvidali – Twitter / Andrea Vidali MD Facebook
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