Deborah’s story is one of determined hope. Despite the complex health issues she faced along her menopause journey, Deborah learned how to listen to her body, find self-acceptance, and overcome adversity.
Deborah’s story is one of determined hope and her commitment to carving her own path through life is inspiring. Deborah discusses her complex medical history, and her battles with endometriosis, surgically induced menopause, and migraine. She captures the emotional pain of struggling to conceive and accepting life without having kids. Despite these challenges, Deborah chose to listen to her body, find self-acceptance, and overcome adversity. With unexpected optimism and a charming Scottish accent, Deborah brings a unique voice to the podcast in this episode.
Content warning: this episode touches on issues around fertility and suicidal ideation.
Disclaimer: menopause: unmuted is designed to raise awareness, encourage communication, and share information. It is not designed to provide medical advice or promote or recommend any treatment option.
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Listen to menopause: unmuted episode on sex & intimacy: An Intimate Menopause w/ Dr. Laurie Mintz
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Episode 4, Deborah's Story
Dr. Mary Jane Minkin:
It’s time to unmute menopause.
Hello and welcome to menopause: unmuted – the podcast where real women tell the stories of their menopause. Every single woman has her own experience of menopause, and whether it’s easy, tough, or a bit of both, sharing that experience helps break the silence around this often-misunderstood chapter of life.
So I’m happy you’re here, and thanks for listening.
I'm your host, Mary Jane Minkin. I'm an OBGYN and clinical professor at Yale University School of Medicine. Treating the physical symptoms of menopause and educating women to take good care of their bodies in mid-life goes right to heart of what I do.
But there is another – very important – aspect to menopause: the emotional, and I don’t think we talk about it enough, so that’s what we’re going to focus on for this episode.
Today’s story comes from Deborah, and as you’ll hear, her medical history is actually quite complex and Deborah’s menopause experience was closely related to her struggle to conceive. Please take note that this episode will touch on issues around fertility and suicidal ideation.
I will say though, that Deborah’s story is one of determined hope, and her commitment to carving her own path through life is inspiring. So, let’s unmute Deborah’s menopause.
Deborah
Hi, I'm Deborah. I live in Brighton, which is on the south coast of England. But I'm very proud to say that I am originally from Scotland. And I am a therapist, mindfulness coach, and I am semi-retired, which is great because it gives me a lot of time to do the things that I perhaps didn't do in my younger years.
Well, I'm very happy to say I'm 59 because I think it's, it's, it's great that I have reached 59. And I have no children, which has been a source of grief and the sense of loss, but I've learnt over the years to live with that and to embrace the [the] sense of loss and to [to] use it as Michael Caine says, “use the difficulty.” And I think, I hope I've managed to do that with that sense of loss of not having children.
I went into my menopause when I was in my early 40s. And I went into menopause because I had, first of all an oophorectomy, which is a removal of ovaries.[1]
And I was desperate to keep my womb, I think possibly for emotional, psychological, symbolic reasons, it felt having had no children, it felt like the last stand to try and keep my womb. But in the end, due to severe endometriosis, I had to have a hysterectomy as well.
And I went into the operation, the oophorectomy, feeling quite optimistic. And then when I woke up, the first thing I remember is waking up with a hot flush. And I was quite shocked that nobody in the medical team seemed to understand how distressing, how uncomfortable this symptom was.
And I had been promised this treatment plan. And I didn't want to leave the hospital without having the medication that I was promised. And that I was told that it wasn't available, I was going to have to wait. And it kind of threw me into this spiral downward spiral, where all that hopefulness and optimism suddenly just fell out. And I remember feeling rage. It was rage, not being able to get this treatment plan that I had been promised because I didn't want to feel the symptoms of menopause because that brought back to me that now this was it. This was the end, there was no chance of having children. And it was a particularly intense and life disrupting moment, which I still feel to this day, I still feel, I can feel the emotion and the tears welling up now as I as I speak about it.
So I went into the menopause, as [as] I mentioned earlier, hopeful, and sadly began to, it was like my sense of my identity as a as a powerful woman in the world began to unravel. And I didn't know who I was. And bizarrely, the struggle to have children, the rounds and rounds of fertility treatment that my husband and I went through. And the effort that I went through to keep my fertility almost became, it became a symbol of my femininity as well. Because this was something that possibly or it is something my body should do, so I was trying to chivvy my body into to doing what it should do. But there were a lot of things that were starting to unravel and a lot of things that physically I was noticing as well. So one of the things I always felt really sort of define me was I was physically quite strong. And I was I felt as if I was starting to lose that physicality, I was starting to lose my, my sense of a, of a woman who was sexually attractive, who had a very good sex life. And I just [just] felt that all these elements of me were starting to fall away, almost like I was, I was losing clothes, as I was walking down the street, you know, one by one bits of my clothing, bits of my personhood, were kind of falling off. So I was feeling very raw and, and very unprotected. I knew I'd never be the person I was, but how do I start reconstructing myself and building something else. That was what I was really trying to, that's what I was grappling with, I guess.
MJM
Like many women who have a lot of experience with fertility treatment, Deborah knew a lot about her body: how it worked, and how it could go wrong. So, it’s no wonder that part of her identity was so closely connected to her reproductive system.
I want to clarify that Deborah had a bilateral oophorectomy, meaning that both of her ovaries were taken out.[1] I don’t want women to think that they will go into menopause because of one ovary being removed.[1]
Let’s begin by talking about some of the physical elements at play here.
Endometriosis can be a difficult and painful condition to live with and is caused when tissue similar to the lining of the uterus grows outside of the uterus.[2] One of the key symptoms is very painful periods.[2]
25-50% of infertile women have endometriosis.[3]
5% of endometriosis patients are postmenopausal.[4] The drop of estrogen that occurs during the onset of menopause can often alleviate symptoms of endometriosis, however, some will continue to have symptoms or might even develop it after menopause.[4]
Some women with endometriosis opt for surgical procedures such as hysterectomy or oophorectomy to reduce their symptoms.[4] Removal of both ovaries will induce menopause, regardless of age.[1],[4]
And because endometriosis is dependent on estrogen levels,[5] this should be taken into account when considering your treatment options. It’s very important that you speak with a health care provider that is knowledgeable about both menopause and endometriosis.
If you’d like to find out more, we’ve put some links in the show notes about fertility issues and endometriosis that you might find helpful.
As Deborah noted, removal of the ovaries will put the body into what’s known as surgically induced menopause which will be sudden and will require a careful, individualized treatment plan.[6]
But even if, like Deborah, the onset of menopause is expected, it can still be quite a physical and emotional shock, and you will need to allow yourself time to adjust and adapt.
It is also something that you will really want to explore with the people closest to you, especially if you are in a relationship, because you will need to chart this new path together, and that can be quite destabilizing.
Deborah explains this very powerfully, let’s listen to her.
Deborah
On the, with the question of, of intimacy, and my [my] sex life, I, it felt like, almost overnight, I, I almost lost my sexuality, what I lost was, with a combination of the physical side of things, and the emotional and psychological side, I lost the desire for desire, so I no longer felt willing to engage with the notion of wanting to have sex, because my body had changed. And, and not just that, there was the emotional side of it as well, which was, I was no longer able to hope that each time I was intimate with my husband, this could be the time that we were going to have a child. And every time I even approached thinking about or being close to my, my husband, that would flash into my mind, and it would just completely sort of smash any desire that I had.
And I think, where perhaps we fell into difficulty when we did about our physical, the physical side of our relationship was because he was struggling to understand and he wanted to understand, and I didn't have the vocabulary, I just didn't know how to explain it. And it took a long time. And I think I, at one point, I remember thinking, I have to be patient with myself. It took it felt like it took quite a lot of courage to actually say to my husband, I'm not feeling this desire that I used to feel. And that was a huge loss. I remember having the first conversation and just sobbing because I said, you know, I don't think anyone can quite understand what this loss of desire represents. And how sad I feel that something very fundamental in our relationship is changing or has changed.
But I think it was a very, very key moment because that was when we could start to reconstruct what our, our intimacy felt like and look like. So, the communication was key, I think in in those moments, being able to talk about it, and to cry, and my husband's amazing, he’s just an amazing, amazingly generous person, spiritually and emotionally and he just listened. You know that that was how we started to rebuild. In order to move forward we had to come at things from a different angle. So it really meant taking, as I saw it, at that time, the threat of sex out of things for a while. And just recognizing that being close and being intimate was the most important thing. So however, that manifested itself, if that just meant having a really lovely hug, long hug, you know, those were key moments where, as I said, I don't want it all to be about the bedroom, so you know, I don't want it, the bedroom and the bed to symbolize this, this horrible sense of grief and, and frustration and anger a lot of the time. I quite often felt very angry. So by taking it away from the bedroom and taking the focus away from sex in the bedroom, I think that we managed to start building from a different perspective. And I gradually felt myself start to, the only way I can describe it is soften, relax, I started to feel both my physical and my emotional muscles just starting to relax, that I was still this, I’m still attractive to my husband. And that's what really mattered to me.
Intimacy and sex can be anything. It could be whatever you want it to be. And you, as long as you are feeling in some way valued and that you have meaning in your relationship, and you still are intimate in the important way, in ways that are important to you that that's what's key. That's what I felt was key for me.
MJM
Deborah makes a very important point here: that intimacy and sex are what you and your partner want them to be.
There can be all sorts of reasons why couples need or want to redraw the boundaries of what constitutes sex – maybe illness or injury, different scheduling needs, lower energy levels, vaginal discomfort, erectile issues for a male partner, stress, or just a change in preference.
There really is no such thing as normal when it comes to sex, and good sex is about so much more than the number of orgasms you have.
Of course, what is essential is good communication and understanding, and that was where Deborah and her husband really achieved a lot.
It’s ok to find these conversations difficult, especially if you need to talk about changing a status quo that you were happy with.
But a nourishing sex life is not only perfectly possible in midlife and beyond, it’s also good for your physical and mental health. Working with a therapist, either individually or together is a very good option, but there are lots of ways to approach this.
Some issues will need a practical solution such as using lube or extending foreplay, and some are much more about talking, and how you relate to each other.
I had an in-depth discussion about intimacy and sex during menopause with sexuality psychologist Dr. Laurie Mintz in our bonus episode from season 3. Our conversation is full of insight and advice, and I do recommend that you take a listen.
This is menopause: unmuted, where we talk about real women's menopause stories. I'm your host, Mary Jane Minkin and today we’re listening to Deborah who had a lot to contend with after an oophorectomy which was then followed up with a hysterectomy.
As we’ve already heard, there was a lot for Deborah to come to terms with, and she worked hard to rethink her identity and relationship with herself and her husband.
But there was another condition that Deborah had to contend with: migraines. Let’s return to her story.
Deborah
With menopause and after the oophorectomy especially, I found that my migraines that had been what's called episodic, and episodic means anything under 15 headache pain days a month, anything over that is chronic.[7] So I used to have episodic migraine condition, which I find manageable, like, up until I'd say my 30s when I went into menopause, my migraines became unbearable. I lost two careers. My first career was as a purser for an airline and migraines became unmanageable with that lifestyle. So I took redundancy, and then I retrained as a counsellor, and I loved my work, I really built up a very, very busy counselling practice.
But my migraines became worse and worse and worse to the extent that I could no longer juggle my migraines with my clients. So I literally handed my practice over to two fantastic colleagues that that I knew. And then I was kind of drift-, yeah, I was drifting. I was anchorless, I didn't really know what or who I was anymore. It was almost like my migraine condition was becoming my full-time job. And I got to my lowest ebb with it when I started having suicidal thoughts. And I'd been through every single medication you can think of. I thought, where am I going to go now? What am I going to do? And I knew I had two choices. One was that I wasn't going to be here anymore, or I'd come up with my own pain management plan.
And after a bit of reading, I decided that I was going to try to change my way of eating. It wasn't a diet, I wanted to change my way of eating. So, growing up in Scotland, I got used to diet which was quite high in sugar. So I decided that perhaps I could take a lot of the sugar out. In fact, I took all the sugar out of my diet, I decided to try some mindfulness meditation. And I also decided, probably like a bit crazy, but I decided to try cold water swimming because I'd heard that it helped with inflammation. And so those three things became my three pillars and I think the key for me was that I wasn't looking for a cure, what I was looking for was a way to live, and to live with my migraine condition. But to go back a tiny little step first, in order to do that, I had to accept that I had a chronic condition. And that taking rest and doing what was good for me physically and emotionally, were acts not of self-kindness, although they are not just of self-kindness, but also of self-preservation. But the amazing thing is that my migraines did start to get better, I started to feel better. They’re by no means have they gone. And I'm not saying that my way of dealing with this is everybody's way, but it has to be very personal to you, and it has to work for you. So yes, acceptance was a huge part of, of that part of my life.
MJM
Migraine is a condition that is really quite widespread, so let me share some key information with you:
Migraines are not just intense headaches. Although severe headaches are a hallmark symptom, migraine is a neurological disorder which can include other symptoms such as dizziness, nausea, vomiting, and sensitivity to your environment.[8]
Women are more likely to suffer from migraines – 21% of women while 10.7% of men are affected by migraine/severe headache in the US.[9]
Deborah made a very astute observation, when connecting her hormone changes to her migraines. It is true that migraine activity is related to hormonal factors, in particular estrogen levels. It’s common for women to experience worsened migraines during perimenopause, although they often improve over time after menopause.[9]
Improvements in migraine are typically seen in women who experience natural menopause, while unfortunately as in Deborah’s case, they can often worsen following surgical menopause.[10]
There are options available to help manage migraine, so if the symptoms here sound painfully familiar, I urge you to speak with your health care provider to identify what lifestyle changes and treatment options might be right for you.
If you are experiencing issues with your mental health, I do recommend you speak with a loved one and contact a healthcare provider about getting support.
We’ve included some helpful links in the show notes, although if you’re in need of immediate support you can call, text, or chat the Suicide & Crisis Lifeline at 988 – which is free, confidential, and available 24 hours a day, year-round.
As Deborah’s story shows, there’s a huge psychological burden to bear when living with chronic pain and it shows real strength that Deborah decided to focus on living with her pain.
Acceptance is such a key part of making a big personal change, and it’s great to hear Deborah talk so sensibly about rest and self-care being at the heart of her move towards living more comfortably.
I’d like to challenge you to think about how you could build more self-compassion into your life. And it can be a real challenge to do this, especially when we’re all so busy.
It’s a topic that Deborah has thought about deeply…
Deborah
When I look back, I honestly think that having had the hysterectomy, and losing my ovaries, before I wanted to, going through the, the chronic migraines, have in some strange way been a gift. And I don't want that to sound as if I'm being patronizing or as if it's one of, you know, a real kind of romantic twist on some very difficult issues. I don't mean that at all. But what I mean is that I've kind of learned from them, for instance, learning about rest, and taking the pressure off yourself. Perhaps I wouldn't have learnt that when I did. And maybe I'd be learning it, just starting to learn that now, had I not had those difficulties before.
So I guess for anybody who may be, they’re in perimenopause, or if they're contemplating what it's going to be like, as they go through menopause. The thing that I guess I would say is that as often as possible to let things unfold, and to notice and to be aware, to be aware of what's happening, and to ask yourself questions gently, about how you feel and where you think you're going. But also looking for the opportunities and the openings, some of the doors are opening, that we can fail to see if we're very, very wrapped up in some of the very, very strong emotions that come along with the physical and the psychological changes that menopause brings. And if there's something I would say is never lose your voice never let anybody silence you.
MJM
Very wise words, Deborah. Thank you so much for sharing them with us and for your thoughtful reflections. May you enjoy many more swims in the chilly English Channel!
I hope you found Deborah’s story inspiring, and if you’re struggling with your own menopause – whether that’s physically or emotionally, I hope you feel reassured that things can get better.
If you’re struggling with fertility issues, we have included some links in our show notes that you might find useful. And if you are struggling with low mood, depression, or suicidal thoughts, please reach out to somebody.
I’m Mary Jane Minkin, thank you for listening to menopause: unmuted. I’ll be back soon with our next episode where I’ll be joined by special guests to talk about balancing menopause with your working life.
Before I go, I’d just like to say: don’t suffer in silence. Don’t worry about speaking up about your menopause.
Women should be able to discuss menopause with their health care providers. A woman can speak out about menopause with her OB/GYN, primary care provider, nurse practitioner or midwife. There are even designated menopause practitioners that a woman can visit if she needs more information.
Special thanks to the Women's Health team at Pfizer and to Studio Health for producing this series.
We’ll talk again soon.
[Disclaimer]
This podcast is provided for educational purposes only and is not intended to replace discussions with a healthcare provider. Please speak with your healthcare provider regarding any health questions. The opinions expressed in this podcast are the opinions of the individuals recorded, and not necessarily opinions endorsed by Pfizer. The women in this podcast are participating voluntarily and have not been compensated for their appearance. The host has been compensated by Pfizer. This podcast is only intended for residents of the United States
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