MARIELLA-my health journey: living with endometriosis, adenomyosis and Polycystic Ovary Syndrome.

5th June 2020 No Comments

Meet Mariella Green. She lives in England, United Kingdom and has just finished her law degree. She will be sharing her health journey with us.

 SAB: Tell us about your health story.

MARIELLA: Since getting my period at age twelve(12) I have had awful heavy, long, painful periods. My hormones felt totally out of whack, I gained weight quickly, I had really bad cystic acne and just genuinely felt really down about myself and my body. I was put on the contraceptive pill at age fourteen(14) for my acne and irregular periods which I remained on till I was sixteen(16) years old. This helped slightly with my acne and to regulate when my periods came and how long they lasted but it didn’t make them less heavy or cure my acne and it made me gain even more weight and become very depressed. It was when my doctor tried to prescribe me anti-depressants that I thought I would try coming off the pill and see if it would make me feel better. Within a month of coming off the pill, it was like a veil had been lifted and I was myself again. This made me angry. But all my previous symptoms came back with a vengeance. I was put on Accutane for my acne and got the hormonal coil for contraception. I then went to the doctors with my awful periods and back pain and she finally, looking at my symptoms collectively sent me to a gynaecologist, nearly 5 years after my initial symptoms.
I went to see a gynaecologist who examined me and said I was very tense internally and he said he was fairly sure I didn’t have Endometriosis and thought I should see a sex therapist because I had created a mental block that was causing my painful intercourse. I couldn’t get behind this idea it seemed ridiculous and like he had ignored all my other symptoms. This really put me off pursuing further treatment until maybe six months later when I was in so much pain I asked my doctor to refer me to a different gynaecologist for a second option which she reluctantly did.

This gynaecologist did the same internal examination together with some additional questions and said he suspected I had Endometriosis and a tilted uterus. He wanted to operate and correct the tilt in my uterus at the same time but I really didn’t feel comfortable with how he made me feel like my questions and queries weren’t his responsibility and like he didn’t have time for them. By this point I was fairly certain I had endo and I wanted to find the best surgeon for my excision surgery( this is the surgical removal or resection of a diseased part). I found my current gynaecologist who is a specialist in Endometriosis. He did some blood tests and found that I have Polycystic Ovary Syndrome (PCOS- a condition that affects how the ovaries work/function) ( which I had had three(3) negative blood tests for by my doctors) and he suspected Endometriosis and operated the following month. He also told me that although my uterus was tilted it was more harmful to correct it than leave it and this hadn’t been the protocol for over 5 years.  He found stage 3 Endometriosis all over my pelvis and throughout my stomach. It is now 7 months after my surgery and although I had significant relief for the first 4 months after some pain has now returned and my ultrasound has found adenomyosis ( Adenomyosis is a condition that causes severe bleeding and pain during periods) which unlike endo cannot be cut out so I am now seeing a pain management specialist to deal with my pain and I am hopeful I will get to a stage where I do not rely on pain medication to function daily. 

Mariealla after surgery.

SAB: How did you find out you had Adenomyosis. Endometriosis and PCOS? What was your reaction, how did you take in this heartbreaking news?
MARIELLA: I first heard I had Endometriosis and PCOS, and after years of battling undiagnosed symptoms I felt really relieved initially. I felt validated and like I hadn’t been lying or wrong about how my own body felt.
However finding out I had Adenomyosis was a totally different experience I broke down in tears, I felt so defeated by my own body. I have always wanted children and I get like this really put the nail in the coffin of that dream of carrying my own children to term. Yes, I found that diagnosis particularly heartbreaking I think just knowing you are going to be in pain and the only thing they can do is a hysterectomy, it was a lot to handle. 

SAB: Would you say you have a good support system around you? How important is it to have the right support system and what does Adenomyosis, Endometriosis and PCOS do to one’s mental health.

MARIELLA: I have amazing support from my family and my partner. I think it was difficult for them to understand what I was going through and getting a diagnosis definitely helped them. I couldn’t have gotten through all of this without them, someone to hold your hand and say nothing when you’re hurting and also someone to reassure you when you don’t feel like there is an end to it all. It is not an easy thing to support someone through but I don’t think they will ever realise how much difference it makes to the person struggling to be supported. I don’t feel like there is any part of my life that these conditions haven’t negatively affected, my daily life, my mood, my sex life, my mental health, my body and how I feel about it etc. It is a battle and fighting it silently is such a strain on your mental health. My Instagram account: https://www.instagram.com/surviving_andthriving/ has really helped me to realise I am not alone and to share the ups and downs of my journey. I’m so grateful for all the amazing people around me and if I have gained anything from these conditions it is these relationships. 

Mariella with her partner, Ben Weaver.

SAB: What are your views on the awareness of these health issues as even though endometriosis gets a lot of awareness (which is not so much really), PCOS and Adenomyosis are names women rarely hear or know about.

MARIELLA: I had NO idea what Adenomyosis was at the time I was diagnosed, which I believe is reflective of the sex-biased within medicine. The time and money invested in curing conditions that only affect women’s health is astoundingly low. More awareness is needed for these conditions not only to push governments into addressing the gender bias in medical education and investment but also so women like me don’t have to wait 7 years for a diagnosis and be made to feel like their pain is normal or okay. 

Recovering well after surgery.

SAB: A lot of adolescent girls and women are going through one form of pain or the other with tummy issues. What advice do you have for such people?
MARIELLA: Take time to learn what triggers your pain and remove or reduce it if you can. Stress is a huge trigger for me, meditation and yoga have really helped me to reduce the inevitable stress in my life. Health is wealth and nothing can be more important to invest in than your health and wellbeing. Similarly, it is so important to be empowered to be your own advocate, because no one cares as much about your body and your health as you do. 

SAB:  What are you doing to improve or increase awareness after all you have been through and going through surgery.
MARIELLA: I talk about my conditions a lot more ( to anyone who will listen)! I try to spread awareness through my Instagram account and whenever I raise money for a charity I try to get Endometriosis UK and other related charities as beneficiaries of the initiative. 

SAB:  What do you do for fun or relaxation?
MARIELLA: I love yoga, walking and spending time with my family and friends. 

SAB: Finding the right pain management is not an easy task. Can you say you have found one that works for you? and do you feel that there is hope for a better life without pain for women going through such pains?

MARIELLA: It is so hard to definitively answer this because my pain changes so much, sometimes a heating pad, rest or a hot bath really helps me, sometimes I need medication and sometimes even that isn’t enough. I am seeing a pain management specialist currently and he has opened my eyes to the range of potential treatments that could help me (ie Botox injections, different long term medications, psycho) that I never thought about. I would encourage women in long term pain to keep the faith and keep exploring different avenues of pain management because I am really hopeful that there are some out there that can really help, you just have to find them! No one should have to live in pain. 

My name is Mariella Green and I Sparkle.

Sisi Alero

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Welcome to iSparkleNow blog. My name is Alero, I love to encourage and inspire people who are going through difficult and trying times, letting them know they cannot give up and that they have loads of reasons to keep pushing and keep going.

Sisi Alero

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