Sexual and reproductive health: let's break the silence on adenomyosis

Adriana Leigh G.
Posted January 9, 2022 from Canada

We are taught to feel shame about discussing our gynecological health.

We receive messages in many ways, often by silence on the topic or, as many of us have experienced, being taught to resort to  "baby" language, like "pipi" to refer to penis, vulva or vagina.

This teaches us as children to internalize shame around sexual and reproductive health.  

I now break the silence in solidarity with many of you on World Pulse working to break taboos on sexual health and reproductive health and menstruation.

As part of breaking my own silence, I share with you a condition I struggle with which is often not discussed called adenomyosis.

Some of you may have heard of endometriosis, which is more well-known, and adenomyosis is in some, ways its sister.  

According to the Mayo clinic Adenomyosis (ad-uh-no-my-O-sis) occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle.

An enlarged uterus and painful, heavy periods can result.  

Some of the other many symptoms can include:

-Heavy or prolonged menstrual bleeding 

-Heavy bleeding can result in anemia which causes other health problems

-Severe cramping or sharp, knifelike pelvic pain during menstruation

-Chronic pelvic pain

-Urinary symptoms including stress urinary incontinence, urgency, daytime frequency, urge urinary incontinence

-Pain during intercourse

Some studies have suggested a potential correlation with uterus problems, such as endometriosis and childhood sexual assault, such as I have experienced, but this is not always the case.  There is less written on this around adenomyosis and it needs to be talked about more. For me, given my experience, I know there is a correlation.

Risk factors for adenomyosis can include:

-Prior uterine surgery, such as C-section, fibroid removal etc.

-Childbirth

-Middle age

For those who have severe discomfort from adenomyosis, medical research has shown that hormonal treatments can help. Removal of the uterus (hysterectomy) is cited as a "cure" (which, for me is not an option).  The disease usually resolves after menopause.

Doctors may be dismissive of adenomyosis, as I have experienced, mimimizing the patient's experience as it is not considered "life-threatening', but can nonetheless severely impact quality of life.  

For me information has been power, as well as learning how to advocate for myself in the face of medical practioners that do not use a survivor-centred and trauma informed approach. These practioners can be triggering in their dismissiveness (eg: "it is not that big a deal" "just take advil").  These and other "recommendations" can be triggering and minimizing.

Some remedies that have helped alleviate my symptoms include: prescribed iron supplements for anemia, heating pads, pelvic physiotherapy, yoga and mindfulness meditation, talking about it and naming it (!) as well as movement such as dancing. These remedies, more than only pills for pain relief -- or something more invasive that comes with its own risks -- removal of the  uterus, have had an impact.  As I heal from past experiences, the harshness of my symptoms also becomes more manageable. 

This is my experience, and I know the journey will be different for everyone. 

More on adenomyosis can be found here.

https://www.mayoclinic.org/diseases-conditions/adenomyosis/symptoms-caus...

https://www.jeanhailes.org.au/health-a-z/vulva-vagina-ovaries-uterus/ade...

As I share with you,  I heal myself. As I share with you, I hope this heals others.

I welcome sharing of your experiences here, how this has helped or additional questions on adenomyosis.

Hugs to all in solidarity from Montreal,

Adriana

This story was submitted in response to Our Bodies, Our Health.

Comments 26

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Erisjewo
Jan 09
Jan 09

This story is great because it is an important information for me.

Adriana Leigh G.
Jan 09
Jan 09

Hi Erisjewo, so great to hear, this warms my heart that this information is useful for you!
Hugs to you from Montreal,
Adriana

Regina Afanwi Young
Jan 09
Jan 09

Lovely write up. I hope it will help lots of women out there. I use to have very heavy periods but I was made to understand it was normal. Thanks for opening up my mind on this.
Happy new year dear sister

Adriana Leigh G.
Jan 10
Jan 10

Hi Regina I hope it does help other women! Yes many women do have heavy periods and not all would have this condition but I suspect some might but it is not talked about enough so they may not know.

Big hugs to you,
Adriana

Tamarack Verrall
Jan 09
Jan 09

Dear Adriana,
Because of your wise and gentle openness, many now have access to such important information solving unanswered questions and/or being able to carry this information forward. There is so much distain, ignorance and disrespect for us as women regarding our bodies and especially menstruation, from medical staff and generally. Your words bring much openness and clarity because of your courage to break the silence. Thanks for letting us know about a painful medical problem and the connection to sexual assaults. I had never heard of adenomyosis. May you soar in your healing!
Hugs,
Tam

Adriana Leigh G.
Jan 11
Jan 11

Tam! What an uplifting message I was so happy to receive from you. What a relief to hear from women like you who just "get it"! There is an odd disdain for women's bodies, even from women medical practionners themselves (they are after all, in the same world we are). It is liberating and at the same time, I realize that liberation like this is a process, that we always are working at, chipping away, and that needs to also come from changes within to change the outside. The power of naming to you and you having seen and responded just feels like wow, this is another step!
Huggggs,
Adriana

jomarieb.earth
Jan 10
Jan 10

Dear Adriana,
I'm so proud of you for sharing your journey and challenges regarding your uterus. Having a uterus has many challenges and journeys. In the USA far too many hysterectomies have been performed because the uterus remains and ever changing organ that cannot be fully controlled nor understood. I personally was offered a hysterectomy with every exam I ever received because I had harmless fibroids. I was evaluated by the director of UCLA Gyn, who told me that surgeons like to perform hysterectomies because it's easy to convince a woman to comply. Most women don't question it. And it pays well. This is a medical reality. He warned me not to fall for this trap because my condition would subside at menopause, and it did. I was the only woman in my family with a uterus and had no females to share stories with, and had to learn things on my own as well.
Good for you for looking into your condition and embracing your journey with it. There is very little common knowledge of the irregularities of the uterus. But there are plenty of ways to dismiss the uterus.
I applaud you Adriana for sharing and caring about yourself and others.
Hugs...JoMarie

Adriana Leigh G.
Jan 11
Jan 11

Jo-Marie, So awesome to hear from you and thank you for sharing about your experiences. This really got me thinking about this disdain and our relationships to the uterus. So extractive - I cannot believe you were the only one in your family with a uterus. I bet if we were to do anoymous surveys we would see shocking results . Come to think of it my grandmother also did not have a uterus, as the go to was removal. I love having you join this journey and support the idea of NOT doing this -- it is a part of my body, whether I choose to have children or not and it is invasive.
There is indeed not enough discussion about irregularities of the uterus for this very reason you raised -- we just extract, extract! No more.
I am happy to hear that your fibroids subsided at menopause and you made it through. I believe that menopause will also be a new chapter for me on this.

I am sending a giant hug to you Jo-Marie from freezing Montreal in solidarity,
Adriana

jomarieb.earth
Jan 11
Jan 11

The very same doctor that I mentioned above who gave me good advice about the uterus removal being an income for many doctors, also added...the uterus is a support for other organs. When you take away the support, the others organs lose support as well. And they have to be rearranged, find a different position to thrive in, causing more complications...like bladder issues. The uterus functions as much more than a cradle.
Menopause is a wonderful adventure. When you are ready to spark the conversation, I'm all in! Hugs from the south sister!

Adriana Leigh G.
Jan 11
Jan 11

Oooh I love that I have a menopause partner! I am in the perimenopause phase I believe (which is even less discussed). This information you shared is super empowering -- and provides concrete reasons for why I am a no for extraction. And another thing...let's change the name of hyterrectomy, for gosh sakes, the root of the word is "hysteria" from the time when they diagnosed so many women who did not agree or felt...anything that someone could not understand as "hysterical"!
Hugs!
Adriana

jomarieb.earth
Jan 11
Jan 11

Uterusectomy??? Maybe??? By the way...just for fun, as the need for feminine products starts to dwindle off into the sunset, you will have a built in disposable income budget to do something else with. Also you will have a new shelf or cabinet space to fill with something else of your choice. Heads up!

Adriana Leigh G.
Jan 11
Jan 11

Lol! Uterusectomy is perfect - and exactly what it is, no stereotypes. Cannot wait I can donate that money elsewhere and redecorate. I had a final thought - interesting that there may be some differences around how often hysterectomy is recommended also based on whether there is a privatized health care system. I suspect in the states this can contribute to the culture of extraction around uterusectomies (see I am using it in a sentence!)

Hugs,
Adriana

jomarieb.earth
Jan 11
Jan 11

Absolutely the privatization in the USA of healthcare has everything to do with it. My trusted doctor who gave me the good advice called hysterectomies "rent money". In this case I used the known name for other sisters to understand.

Tamarack Verrall
Jan 11
Jan 11

Dear jomarie,
Your information is as critically important for us to know, as it is horrifying. So empowering to read that you stood your ground!

jomarieb.earth
Jan 11
Jan 11

Thank you Tam. If I had a kidney infection, cold, food poisoning, upset stomach, USA, Mexico, every examination from ages 27 to 55 I was offered a hysterectomy. I had no complications or episodes ever. Just normal, liveable fibroids. Women in menopause, like me at 65 are not immune. If you have a uterus and you are still breathing, it has a potential income for the medical system.

That's a very good one sis. I will add to the little idea I had when I use to have menstrual cramps. During that period I drink more of hot water. Thanks so much for adding my knowledge sister and hope many will also learn from this too.
Happy new year sis

Adriana Leigh G.
Jan 11
Jan 11

Amazing Honorine to hear that this could help. I also find that warmth is so soothing, hot water is a good idea to add to the hot packs! Hugs to you from Montreal and a happy new year to you,
Adriana

charlenegailtaruwona

Thank you so much Adriana for a very very informative piece and very very useful information. I have learnt something new today and I will also help spread awareness in my community. These issues are hardly or barely talked about from where I come from. Indeed we need to demystify conversations on SRHR especially when it comes to women's health. Thank you

Adriana Leigh G.
Jan 14
Jan 14

Charlene! It warms my heart to hear that this will be useful that that you will be sharing with others in the community. How interesting that despite our different contexts, the silence on these issues seems to permeate across cultures and time zones - and together you and I have disrupted this silence!
Hugs from Montreal,
Adriana

charlenegailtaruwona

Ooh yes Adriana. Issues of SRHR do cut across cultures and boarders. This is how human we are. Yes, and disrupt the silence we shall. Thank you very much for speaking out.
Hugs from Harare

Grace Iliya
Jan 14
Jan 14

Hello Adriana,
Niece write up, very informative as I am just hearing about this for the first time. I appreciate the bold step you have taken to share this with us, I am sure a lot of women will be educated as well Thank you.

Much Love

Adriana Leigh G.
Jan 14
Jan 14

Grace! So great to hear -- this was my hope; that this is information you can share with others.

Big hugs from Montreal,
Adriana

Duleh12345
Jan 15
Jan 15

Hi, Adriana, hope you are doing great.
I love to read your great story and I believe that this is important information for me and I love to up, I encourage your amazing efforts keep it up share more with us :) I heartily invite you at my page :)

Adriana Leigh G.
Jan 16
Jan 16

Duleh, hello! Great to meet you, and excited to hear more from you. Fabulous to hear that this was good information for you as this was my hope and vision. I look forward to getting to know more about your journey and work!

Cheers from freezing Montreal!
Adriana

Catherine Djiemo
Jan 22
Jan 22

Hej Andriana,
This is a piece to read and thenbre-read for more understanding and how to break these walls. There is a saying my mom thought me while growing up "women donot talj about their problems they swallow it" . Mom was very kind to educating me to grow up and get marrued to be a goid wife. " Drick this she will say ,it will wash your belly so you can make babies when its time.
Our culture ,our people, our communities, our social system teaches women to swallow their problem and pain. With a story like this i add to your voice and those of other women with Endometricioses, do not swallow you problems or your pain. SRH is a human right. Lots of hugs
Mvh
Catherine Djiemo

Adriana Leigh G.
Jan 23
Jan 23

Hi Catherine,
Thank you for stopping by! Happy to have you here as I know you do important work in SRH. Interesting and important point about how we inherit these ways of talking (or not talking) about gynecological health, which I am also unpacking. I love this mantra to not swallow our pain - let's normalize naming our pain to eachother and holding space for it. A huge hug to you from Montreal,
Adriana

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