Women and Equalities Committee

Oral evidence: Women's reproductive health, HC 1773

Wednesday 18 October 2023

Ordered by the House of Commons to be published on 18 October 2023.

Watch the meeting

Members present: Caroline Nokes (Chair); Elliot Colburn; Kim Johnson; Lia Nici and Kirsten Oswald.

Questions 1 - 46

Witnesses

I: Naga Munchetty, broadcaster and journalist; Vicky Pattison, broadcaster and TV personality.

Examination of witnesses

Witnesses: Naga Munchetty and Vicky Pattison.

Q1                Chair: Good morning. Welcome to the Women and Equalities Committee and our first evidence session into women's reproductive health.

I thank both our witnesses, Naga Munchetty and Vicky Pattison, for being here this morning. Committee members will ask you questions in turn. Hopefully, we will make it clear which one of you the question is being addressed to, but if at any point there is anything you wish to chip in with, please do indicate and I will try to bring you in at the appropriate time.

I will start. There is a real challenge in enabling and encouraging people to talk about reproductive health: it is a massive area of silence, misunderstanding, and general lack of knowledge. Can I come to you first, Naga, and ask you a bit about your experience of how challenging it was to speak out about your symptoms and, indeed, what those symptoms were?

Naga Munchetty: There are two parts to me speaking up about my personal health on Radio 5 Live.

First was when I had the coil fitted—which was a traumatic experience—and we were talking about pain relief. I had seen a piece by Caitlin Moran about her fitting and I was talking to my team about it in our morning meeting, ranting about how awful it is that women's pain is ignored. The team picked up on this and we decided to talk about it.

As journalists, we are never the story, or we never aim to be the story; we are there to get the story out of people like you, Caroline, or, indeed, Vicky for example. So I was very reticent about talking about my personal experience, but the reaction from our audience was overwhelming because it was a time when women were told to put up with it. It was normal; pain was normal, discomfort was normal, periods were normal, and anxiety was normal. I went for my coil fitting in my gym gear thinking I would be in the gym straight after, and I screamed the place down. That was about two and a half years ago.

The reaction to me sharing my story was overwhelming, to be completely honest, and we made a change to NICE guidelines for pain relief to be offered to women because I had been told, “Take a couple of paracetamol, maybe a couple of ibuprofen.”

Then, last November, I bled for 30 days non-stop. In fact, I have just looked back at my diary, and I bled for a total of 14 out of 15 weeks because my adenomyosis, which was then undiagnosed, was flaring up. I had had extreme pain to the point that an ambulance had been called.

I had a period of about 12 days when I had unnaturally heavy bleeding for that continuous amount of time. Most women know that when you have a period, be it for three or 11 days, you bleed heavily on the first few days and then it eases off, but this was constant and worrying.

The process of being diagnosed with adenomyosis—not that there is a cure or treatment even if you are diagnosed anyway—was infuriating. I pride myself on being someone who does not take no for an answer. I pride myself on asking questions and doing my research, and I am very fortunate to have the tools to be able to do that, which not all women do, and not all partners of women do. The whole process was so frustrating that, again, I spoke about it on the radio: we did a whole programme on it. It was actually after a weekend when my husband had had to call an ambulance because he had never seen me in pain like that. The response was overwhelming, and I spoke to women who had been crippled for years. One woman could not get onto the floor to play with her child because she was in such pain, to the point that her child never asked her to play, and she felt like a failure as a mother, as a woman, and as a partner.

When you hear stories like that—not stories, when you hear experiences like that, it negates the fear of being seen as someone with an ego or as someone who has a story that they want to be heard for attention, because it was not about that.

Again, we have changed the NHS England website. NHS Scotland had it, but there was no mention on NHS England: its reference to adenomyosis—which I knew nothing about before I was diagnosed—had a link you clicked on and it took you straight to the hysterectomy page. It has changed now, but there is the frustration of being told to have a hysterectomy. I have a friend, who is 28, who has been diagnosed with adenomyosis. She has not had children but has been offered a hysterectomy. You can have a hysterectomy or you are told to go on the pill, put up with it, or have the coil. Those are your options and if they do not work for you then suck it up. That is why I speak about it.

Q2                Chair: I appreciate that some of this is really, really personal, but can I just ask, how long had you been suffering before it got to the point of calling an ambulance?

Naga Munchetty: I started my periods when I was 15 and I would bleed for 11 or 12 days; I would say about eight or nine of them were very heavy. I would throw up on the first day, at least once or twice—I would be wrapped around a toilet—and I would pass out at least once or twice but I would still go to school. I was very good at school; I was very academic and musical. That lasted throughout the whole of my life. Whenever I went to the doctor, I was told it was normal. I would still go to work, and I have quite a high-profile job. I would not sleep because I would have to set an alarm, say for 2 am, every four hours. I would be lying on a towel and I would have a heavy sanitary towel and a super plus tampon in, and I would set an alarm to change. It made relationships difficult: I had to have very understanding partners. I would worry about what I wore, particularly when I was in front of the camera because of leaking, but my adenomyosis was not diagnosed until I was 47.

Q3                Chair: Thirty two years?

Naga Munchetty: Yes.

Q4                Chair: How much of that time were you told that this was just a period, this was normal?

Naga Munchetty: Thirty two years.

Q5                Chair: Have your symptoms changed since you have gotten older?

Naga Munchetty: No, they were constant. They have always been like that, but I was put on the Depo injection for seven years. I had been on the pill, which had not really helped. The bleeding was still bad, but the pain was less. I then got put on the Depo and the bleeding stopped. It worked for me, so I feel I was incredibly lucky which is madness in itself, to feel lucky that a hormone designed for a woman actually works, but I have spoken to women who felt they were losing their minds while being on the Depo.

I was taken off the Depo in my early 40s due to concerns about osteoporosis because you are only supposed to be on it for a certain amount of time. I was given the coil, which was horrendous for me although it has worked brilliantly for other women, and then I was told there was nothing else. So I had nothing and just had periods with the same pain. When the adenomyosis was diagnosed last November, I was put on the mini-pill and my bleeding stopped three months ago. It was not constant, but I have not bled for three months, which is amazing, and my pain levels are much lower.

Q6                Chair: Vicky, a broadly similar question, but how old were you when you first started suffering from your symptoms?

Vicky Pattison: I had what I would describe as relatively normal PMS and period symptoms until I was in my late 20s and early 30s when things really started to kick up a notch. I struggled loads once I hit 30. I went to see various doctors—I have lived in Newcastle, I have lived down south, so all across the country—and I was always told exactly the same thing, “This is PMS. This is what women go through. Every other woman in the world is dealing with this.”

I already felt very silly for going anyway, but I felt even more invalidated then, so I reasoned with myself that I would get on with it. I cannot tell you how many times I got told, “Oh, they will get worse as you get older, this is just natural,” and you believe it. You absolutely believe it, and you believe that you are weak, that you cannot cope with what every other woman is coping with. On top of feeling rubbish for 10 days of the month, if not two weeks, which is what PMDD does, you now also feel embarrassed that you are not as strong as everybody else.

When I was about 33—I am 36 next month—I started persistently going, and I started talking about it on social media as well because I just felt that I could not be the only person going through this. It was through the online community that I first heard of PMDD: women saying, “What you’re describing as PMS symptoms is not PMS, it’s PMDD. Look into it.” So I did; I started looking into it myself. It took me a while to get the courage up to actually go again, and when I went I was told exactly the same thing, “PMS symptoms get worse as you get older,” and was asked if I had tried a certain pill.

For 10 days of the month I was feeling really fatigued, suffering with insomnia, having crippling anxiety, terrible self-doubt, no passion for the things that I normally loved, hated me fella, and almost, in some of the darker moments, thought the world would be better without us in it. I just did not feel good enough.

In the end I went private this year and I could have kicked myself for taking so long to go but, after having been told there was nothing wrong with us for so long, I felt stupid for wasting everybody's time. When I walked in and explained how I was feeling, what I was suffering with, the doctor said instantly, “It sounds like you have PMDD.” I proper just sobbed, like I broke my heart, because I felt, for the first time, like somebody actually listened and took us seriously. Now I am working towards finding something that will help alleviate some of the symptoms. It is not a one-size-fits-all thing—everybody is different—and I suppose it is going to be quite a bit of a journey, but, for the first time in probably about five or six years, I am hopeful.

Q7                Chair: You have used the phrase that you felt stupid, that you felt you were being a nuisance: how much of a challenge was it to feel assertive enough to go into the doctor and say, “This is what is wrong with me,” and waiting for them to agree with you?

Vicky Pattison: I felt ashamed of myself by the end, that I was making such a big deal of something that I had been told every other woman in the world was dealing with. Actually, PMDD affects 10% of women. It could be loads more because it is seriously undiagnosed, and you can see why. I know I felt that I was wasting the NHS's time: that is where I got to. When I was eventually paying to see somebody, I felt like I had more of a right to sit there and speak, and that is mental. That is not right. I felt stupid and ashamed, like I was wasting everybody's time, I felt weak, and I felt that way for years. So, this year it was lovely to finally feel listened to.

Q8                Chair: Do you think there is a challenge with the narrative that this is just a period, this is what every woman goes through? Is there a lack of awareness of what the parameters of normal are? Naga, did you want to come in?

Naga Munchetty: Yes. I completely understand where Vicky is coming from, having been told from the age of 15 just, “Suck it up”, “You’re normal,” and “Everyone goes through this,” and especially to be told that by male doctors who have never experienced a period, and then by female doctors who had not experienced period pain.

I never had PMS, I never had any anxiety, I just had that fatigue, that overwhelming fatigue where you just cannot move; you try to pull yourself out of a sleep and you do not understand why you are so tired. I never had the anxiety, thankfully, but it is just that constant, “You’re fine. Everyone else is putting up with this, why can’t you?” You end up saying, “I have a really high pain threshold, you could punch me in the face and I’ll stay standing.” You resort to that kind of comparison just to show that you are physically and mentally strong. You just end up fighting harder than you should have to.

I went through the same thing: I went private. I was fortunate enough to be able to have private health care and that was the only time I felt I could sit there and take time to force an issue, force understanding, and force explanations from my gynaecologist and not feel bad that I was taking up more than 10 minutes of my GP's time because there was a queue of people in the waiting room or feel that I was indulging myself as if I was something special. We are all special, and we all deserve to be treated well so we can contribute to society and our jobs.

Q9                Chair: Vicky, did fertility play a role in your diagnosis, eventually?

Vicky Pattison: No, it did not. I have chosen to freeze my eggs this year, but that was a completely separate issue. I have been on various different contraceptions over the years. Like Naga, I have tried various different things to help make me feel better. Nothing has quite worked but, no, fertility has not played a part in this, although it might for some other women.

Q10            Kim Johnson: Good morning, Vicky and Naga. I just want to say thank you for being here today and providing your personal testimonies. You are very brave.

I have a couple of questions about treatment. Naga, you have already spoken about some options that were available to you, and I wanted to know which of those were the most successful?

Naga Munchetty: My adenomyosis was not diagnosed until November last year. They had no idea why the pain was happening. They said that the extreme pain, the constant pain I had, was because the endometriosis, which goes outside the uterus, splits and tears the muscles when you have a cycle was the pain I was feeling. You can feel it in your thighs, your lower back and in the muscles around your uterus. It is stopped by stopping the hormonal cycle, hence the pill.

When there was pain around my ovaries, the other treatment I was offered was a laparoscopy, but I was told there was a 5% to 10% chance that something else was wrong: why would I take eight days off work to have to be cut open again? So I refused that. As for a hysterectomy, why on earth would I have a hysterectomy at my age, when I am not even perimenopausal yet? I did not want to go through all that.

I do not want children, and that is the other option that people are told, so the pill was the only thing. I was literally told, “Suck it and see. We'll give it a go, see if it works.” It took six months before the bleeding stopped, and then, as I said, three months ago it stopped.

Q11            Kim Johnson: You have both mentioned going through the NHS and then having to resort to going private. I just wanted to explore why you had to do that, and the impact that it has on other women. Not all women have those opportunities, do they?

Naga Munchetty: No, which is outrageous. There is a lack of specialism in the NHS because GPs are obviously stretched. When I spoke about adenomyosis on my Radio 5 Live programme, there were GPs who got in touch saying, “We’ve never heard of it. We have not been taught about it. We've heard of endometriosis, but not adenomyosis, and we do not know how to spot it or diagnose it.” The only way you can see it is through ultrasound, and even then, I have had three ultrasounds and an MRI, and only one ultrasound specialist saw it, because they are not all trained adequately or in depth enough to spot it.

I was told I had it and shown the scans. The way it shows is because the muscles have split, you see tears, they almost look like Venetian blinds in the muscles, but then it was not spotted in the next ultrasound four weeks later, which is a nonsense. There is a lack of training, and a lack of awareness. I can only talk about adenomyosis and my experience, but to go private was the only way I could force the issue and say, “I want a different sonographer, a different ultrasound specialist, and I want more scans because I have private health insurance and I can afford it.” Of course, not everyone has that.

Q12            Kim Johnson: In terms of going through this process, Vicky, were there any support groups available online that you were able to access to get more information? As you pointed out, information about your diagnosis is quite limited. I was aware of PMS and endometriosis before this inquiry.

Vicky Pattison: Honestly, PMDD gets zero sunlight. Not a lot of people know about it or understand it. It is commonly misdiagnosed in women as ADHD or depression. The first thing I was offered was antidepressants. I am not depressed; I am happy, I am strong, I am mentally well, I have a good life. It is not that I am depressed; I have PMDD. The fact that was offered as a first port of call was incredibly frustrating.

If it was not for online forums, Instagram groups, websites, and things like that which provided me with information, helped me self-diagnose, helped me work out what was going on and provided me with support, I do not think I would have got to where I am. I do not think I would have had the confidence to go private and insist that there was something wrong, because, like I say, I had been invalidated so many times before.

Kim Johnson: Many women are in the same position as well. Thank you both so much for answering my questions.

Q13            Chair: Thank you. Can I ask a couple of follow-up questions about treatment? A constituent of mine contacted me about her experiences, and she has emphasised that she felt she was treated that way because she was a woman, that it was a very patronising, “Go away little woman; this is normal,” from pretty much every tier. Is that both of your experience?

Naga Munchetty: I have had that experience all my life, whenever I have seen a GP: from having thrush and it recurring and a male GP blaming me, blaming my sexual activity, my hygiene, my hormones—just all nonsense. I remember it was only when I saw a female GP, after six months of agony and no sleep, she said, “You can just take this pill,” and it got rid of it. He had refused to even tell me about it. I have had this all my life.

Vicky Pattison: I think with women's health in particular—we are reproductive, we are sexual, everything—it is given less gravity because we are just expected to get on with it, to suffer it, to be brave, whatever it is, be very British, I suppose, but I feel it has to change.

Naga Munchetty: Can I just do a follow-up? I spoke to Dame Lesley Regan—I have the transcript with me—and I said, “Is it fair to say the NHS is failing women at this moment in time?” She said, “Yes, I think that’s fair,” and, “The reason I’m doing this… I don’t think women have got a fair deal.”

Chair: That is from the women's health ambassador?

Naga Munchetty: Yes.

Q14            Chair: The other point my constituent made was that she felt that there was an onus on her—Vicky, you have referred to this—to do the research herself to find out what treatments might be available for her condition. She also spoke of a particular type of pill that had worked for her being withdrawn from the market because it was a high oestrogen dose.

Have either of you experienced that: a treatment that had been effective is suddenly no longer available?

Vicky Pattison: I am really early; I was only diagnosed about three months ago. It has been a fight to get here, but I am only about three months in to trying to find out what works for me. I am still on my first “suck it and see” experiment, so I cannot speak on that.

Naga Munchetty: I was on the Depo, which worked brilliantly for me. That was withdrawn because I reached my 40s and there were concerns about osteoporosis, not that I had any signs, but they said, “This is one of the typical consequences of taking it.” I was in floods of tears. I was panicked. I thought, “I can’t go back to the life I used to have,” when I used to have periods every three weeks and bleed for 11 days. It was, “Tough, you’ll find something that works.”

Chair: “You’ll find something that works,” not, “We’ll find something that works”! Thank you.

Q15            Elliot Colburn: Thank you both for coming in. Vicky, could I come to you first? You have mentioned a little about this already, but could you elaborate on how the lack of a quick diagnosis has affected you in your personal life, in your relationships with other people, and, if you had received a different treatment or faster diagnosis, how you feel that would have improved your life if it had been available to you?

Vicky Pattison: I read this really good quote that says, “PMDD is like building a sandcastle every month. A sandcastle of good habits, of positive vibes, and feeling strong, feeling great, only to have the waves come, crash into it, and destroy it every month.” That is how I feel. I can go to the gym, I can eat right, I can work hard, and I can nurture my relationships. I can be this bright, best shiny version of myself for about two and a half weeks, but no matter how hard I try, once I reach that part of my cycle, there is nothing I can do.

I am short-tempered, I am irritable, I am exhausted beyond belief, I can sleep anywhere—anywhere. But once my time hits: insomnia. My personal relationships have suffered so much. It is a good thing you mentioned having understanding partners: my current partner is so understanding, and I have to tell him, I have to sit down and say, “I can feel what is coming,” and I have to explain, “I'm really sorry about who I'm going to be for the next 10 days.”

It is just so counterproductive to having a healthy relationship, to having a successful career, to being happy, because for 10 days of the month, I do not recognise myself.

Q16            Elliot Colburn: You mentioned your career, and that is another element. Have you ever had to take time off work? How has it affected you and your employment, and what have employers been like? Have they ever challenged you or been difficult?

Vicky Pattison: I am really lucky in the job I have. It is not exactly what you would describe as normal, and because I am really vocal on my platforms, most people are aware of what I am going through. Most people have been really sensitive, but there is only so much information out there, there is only so much people can understand, there is only so much sympathy someone can give when they do not know what you are going through.

A lot of the time, people say they understand and act like they are giving us sympathy or whatever, but they think I am making a big deal of nothing, which I can feel. So, I try to be strong, I try to put my best foot forward and go to work and be the best version of me but, inside, it is horrendous.

Q17            Elliot Colburn: Thank you, Vicky.

Naga, the same questions to you: how has it impacted your relationships with other people, but also what have your employers been like throughout your career, when trying to make them understand?