A NIGHT WITH ENDOMETRIOSIS
Yesterday was Day 1 of my cycle.
It is the scariest day of every month for me. Recently day 1 hasn’t brought me to my knees but last night was like all of the quiet Day 1’s got together to attack at once, and dropped to the floor I was! Before bed the pain was rising and I took my cocktail of pain meds to ebb the feeling, I then attempted to go to sleep. I must have for a short time but was abruptly woken up by the pain.
I will try to describe this to you.
It is like a tiny vicious man is inside with the sharpest knife and is slowly dragging it down my insides. It takes your breath away. The knife feels so close to the surface that you long it will go all the way through the skin so you can reach and and thrust it and the tiny man across the room. Last night the knife started around my belly button and dragged down to the bottom of my pelvis. I writhed and decided to try to sleep, or wriggle in the spare room. No one needs to be woken up repeatedly by their wife once a month. I then spent the next 4 hours crawling back and forth to the bathroom and bed, sporadically taking time to lay on the cool of the bathroom floor. I thought I might vomit at times as this is not an uncommon side affect from the pain. Honestly it’s a shocking thing to see. The blood, the sounds of pain and discomfort, the nakedness of it all…and that’s just what you can see.
The mental scars are even more disturbing and accumulative from years of misdiagnosis and what the disease has taken.
Timing. I had all of this happen last night and today is the first day of MENTAL HEALTH AWARENESS WEEK. I have spoken about my endometriosis before but not directly to the way it has affected my mental health. I want to highlight the longterm affects of conditions and disease can have on a person’s mental health.
I was diagnoses with stage 4 endometriosis when I was 29.
This wasn’t from a Doctor trying to figure out why I, for the last 10 years had been suffering with crippling pain, but because I was getting my fertility checked and they found numerous large growths. At the time, and because cancer in my family history, they immediately wanted me to get checked for anything untoward. I had gone in excited about the prospect of starting a family and was leaving with the fear of maybe having cancer? I had to go back to work, I was a secondary school teacher, and remember the rest of the day being a total fog of ‘what if’s.’ I had my blood work done, a test called CA125, which looked for cancer markers. It came back positive. I got the call at our work end of year party, where I then had to hold in my potential cancer tears, that I would be going to oncology. Talk about terrifying. What they didn’t mention is that if you have endometriosis this test will also come back positive. Maybe they forgot to tell me this or maybe they still didn’t know enough about endo. This was July and I had to wait until September for surgery and a biopsy. My laparoscopic surgery had a 16cm cyst and 2 6cm cysts removed. My recovery was slow. I was black and blue. I had 2 weeks off work. BUT I DID NOT HAVE CANCER. I had endometriosis…
I had to learn to spell this word and then learn what the hell it was. How ironic that I had gone to a fertility clinic to start IVF where they discovered I had a condition that would ultimately mean I would never have a child from my eggs. I tried 2 rounds of IVF. I had 3 lap surgeries. Both were unsuccessful and on my last consultation with the doctor, in Hackney, I was told ‘I think we should start trying with Harriet now.’ That was it. I was done. I need to also, for visualisation, add that the doctor said this to me as she nonchalantly swivelled in her chair, now directing her conversation to Harriet. I will never forget that swivel and what it meant for my future.
I recently went to The London Women’s Health Clinic in Canterbury to get another opinion about how tangled up my insides were and if indeed it was a futile cause to try to go after my eggs. Turns out the swivel was still true. My ovaries are stuck together behind my uterus with adhesions. This is a sticky scar tissue that is left behind from the endometreomas which can stick various organs together. This appointment was less traumatic than the chair swivel. The mental turmoil of being told ‘you’re infertile’ had already happened. I was now just left with the aftershocks of it all. Sometimes they roll in softly without me really noticing and at other times they hit hard and I find it very difficult to see any pregnant woman without becoming emotional.
I had my first panic attack late October 2017.
This followed the chair swivel and our first niece’s birth. I felt very isolated at the time. My family and loved ones never purposefully did anything to make me feel this way but it was complicated and they were trying to focus on positive things which made the reality of my feelings seem more insignificant and unworthy of discussing. There were two life events that happened, and perhaps if they had not been at the same time the outcome would not have been so severe, that contributed to a series of very bad mental health.
Firstly, the chair swivel.
I knew the severity of my endometriosis and the effect this was having on my IVF results. I was trying to come to terms with the fact that I was infertile. Those around me simply didn’t want to believe it and clung to the tiny bit of hope the doctor had outlined. This hope was more surgery, more down regulation injections (these stop your cycle and put your body into menopause- side effects can be both physical and emotional, and include headaches, migraines, hot flushes, or feeling down and irritable) rounds of IVF with a very low chance of success…this didn’t feel very positive or like something I wanted to CONTINUE doing. So I took to working this out emotionally and mentally and emotionally alone which only compounded it and made the grief even louder.
Secondly, there was this gorgeous new baby that was born.
The first grandchild. Our first niece. My wife’s sister’s first baby. And there I was screaming on the inside whenever we would go to spend time with the new happy family. I couldn’t talk about the voices in my head, the emotions I was feeling, the guilt that was eating me from the inside out. This was such a special and wonderful moment for my family and I felt like a monster for feeling the way I did. It all got too much during one visit and I took myself to their bathroom to control the tears. This is when it happened. I lost the ability to breathe. To think. To stand. To control myself. I rode the white capped waves of my panic attack alone and eventually was able to rejoin the group. I never spoke of what happened. It was only later that I explained to my wife about the panic attacks. And years later until I discussed it with her sister.
- I still have wobbles and I still get upset. This blog has taken me most of the day to write. I’ve taken breaks to wipe my eyes and catch my breath. I have an amazing relationship with my niece and look forward to building a relationship with her new sister and my new nephew who will be born on May 24th. There are times when it is still very difficult. There are times when I get so angry with how unfair endometriosis is and that it has taken away my fertility. I sometimes feel like less of a woman. I feel like I don’t belong. I can feel useless and less important. I know now when I have these feelings they are real, they are valid and they need to be felt. I don’t have to agree with them or believe that they define me but I also can’t pretend they don’t exist anymore either.
WHAT HAS HELPED?
There hasn’t been any one thing that has made my mental health better. But it is. I would say BIGGEST contribution to improving my mental health has been the courage to speak openly about it. To talk about the panic attacks and to say that I am struggling. To call out the GIANT elephant in the room and not suppress the anguish. My family know. I have a close network of friends I can call or text if I need to let it out. AND I have an incredible WhatsApp group with other women who are struggling with fertility. We chat. We support. We share. We feel less alone. My meditation practice, gratitude journaling, supportive wife and family, yoga practice and my handsome dog have all been allies to help me put up fights against my endometriosis, my infertility and my mental health. We don’t win every fight but I’m not alone anymore.
WHAT TO DO?
If you are struggling with your mental health, infertility or endometriosis please don’t hesitate getting in contact with me. There are also wonderful charities that are available to help: –
Starting a meditation and yoga practice can be challenging which is why I created my 10 DAYS TO ABUNDANCE COURSE. Please do try it if you are wanting to improve your mental health. I have included some of the practices and tools that have made the biggest positive impact on my mental health. If you are struggling financially but think you could benefit from the course please contact me on firstname.lastname@example.org
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