88 – Endometriosis, surgical menopause and getting the right hormone treatments

0:01So Laura is on my podcast today, who's a very inspirational person for lots of reasons. She's experienced first-hand hormonal changes in her mother that we're going to talk about, and she's had her own challenges, including having menopause at an earlier age as well. So welcome, Laura. Thank you. It's great. I've known your mum for quite a while and now recently got to know you. and you have got a story which we'll talk about but what's been great actually is you are such an advocate for your own hormonal health you are like the picture of how I wish all women could be because you're very calm you're very knowledgeable and you've got a huge wealth of knowledge would that be fair to say yes yeah with mum going the way she has I felt like I had to well your mum's out to advocate for herself in many ways you know many years ago she reached out to people in London and she's you know she's not doesn't live in London but she's had a she's been on my podcast before and talking about her own PMDD but just talk to me from your experience of living with a mother with PMDD.

1:16So firstly me and my mum are like best friends and when I was growing up I remember her regularly just being in tears. She would snap at us like we were kids. She'd snap at us for something that we probably were being naughty, but she'd snap and then I'd go in 10 minutes later and see her in tears because she felt so bad that she'd overreacted. And I just, it was horrible seeing her so upset and she just was always so sad. um and I remember when she got her treatment it was like like a light switch all of a sudden she was just she was happy and she was calm and just yeah it was just lovely to have my mum and even like when she was on she was on the implant for a long time by this point me and my brother were more grown up and we'd moved out and when the implant was running out you'd start seeing some of my symptoms come back and I mean it got to the point we could joke about it we'd go around we'd get snapped at and we'd be like when's your implant due and my brother would just refuse to come around he's like I'll be back next month once you've had your implant not like like just we used to joke about it because we knew how bad it got but since then she's been fine but she's had to fight for that yeah and I remember one story she told me I hope she doesn't mind me sharing but where she I think she'd forgotten her front door keys or couldn't find them and the only way to get in was through the garage door but she had to is this bringing anywhere else she had to damage the garage door to open it so she did that but there wasn't enough gaps so she put I don't know whether it's you or your brother one of you under the gap to open the front door Yeah, so I don't remember it happening.

3:16I've been told the stories. I was four and, yeah, she just drove into the garage to dent it and then I was small enough I could crawl underneath and open the door from the inside. I remember the dent in the garage. I do remember always having a dent in the garage, but it was mum that told me the story about what had happened. I remember her telling me this years ago, And it's funny, but actually I worry about children a lot. I worry about domestic violence in women. I worry about women's vulnerability, especially when they've got PMDD. And this uncontrollable anger. Your mum is the calmest person I know.

3:59She's really not that sort of person if you met her when she's balanced on hormones. But if someone had got in her way then, she would have done anything to them and probably run them over. And so we know people commit. crimes more and they have hormonal changes but the children aren't looked after this I mean she was never violent to you but there are people that really have this uncontrollable anger and it's it's really quite scary actually but just to grow up with someone who's got this volatile temper that that was needless actually because you saw how much better she was with hormones yeah yeah and it it meant that I was very aware of hormone issues and what it could cause yeah so what about your own hormones so I have had endometriosis and probably since I started my periods and I got put on the pill when I was like 13 because I had um horrendous periods but um it uh last year resulted in I needed to have a full hysterectomy and a kidney removed and it caused my kidney to fail um the surgery was obviously really scary we thought it may have been cancerous um my biggest fear was surgical medicals yes after all that like and I said that to my doctor like I was I know he'll get me through the surgery I'm so scared yeah of what's coming afterwards yeah having seen what my mom went through because they removed your ovaries as well yes yes so both ovaries are gone so and how old are you when when you had the operation I was 37.

5:36Yeah. So your hormones, you were having hormones from your ovaries and then you knew overnight that your hormones would plummet. Yeah. And obviously mum is on higher than standard dose oestrogen. I knew that, you know, I'm very similar. There's a very good chance I might not absorb oestrogen as well. and I booked an appointment with you before I even had my surgery. This is why it's perfect though, because if I was having my thyroid gland removed, I would want to preoperatively talk about when am I going to start thyroxine, how's it going to work? And somehow so many women have their ovaries removed and they're told just see how you get on.

6:24But actually you're young. The guidelines, the evidence are very clear that you have to have the right dose of hormones to improve your future health, even if you didn't have any symptoms. Because women, especially under the age of 40, have an increased risk of diseases without those hormones. But you did the right thing because you came in and we spoke. Because your knowledge of hormones is so much better than a lot of people, it was a very educated conversation, very shared decision-making, because also we spoke about not just estrogen, didn't we? yeah I knew I wanted all three from day one so I've got three hormones there now yeah which again makes sense and it's interesting because I I'm not really wanting to be rude about other doctors but if you'd come to see me maybe 20 years ago when I was a GP I would have not been able to have that conversation with you and I would have said hang on I don't think you need the other hormones I think it's just easy I would honestly I wouldn't have known because no one taught me.

7:26But I did learn, probably as a teenager, actually, that our ovaries make estrogen and progesterone. And then someone at medical school told me that we don't need progesterone unless we've got a womb. And I don't know why I didn't challenge it then, because it works all over the body and the brain, as you know. And then about 15 years ago, I learned for the first time that women had testosterone in their bodies, because no one taught me that before. And then I'm like, hang on, if we've got it in our bodies, it must have a function. So I learned about the physiology and how testosterone works in our brain and body.

8:00And about half of our testosterone is made in our ovaries. And I remember saying to a menopause specialist a few years ago, so do women routinely just have testosterone when they have their ovaries removed at a young age? And she looked at me and said, no, Louise, only if their libido is really bad after the operation. And that still stuck with me because at the time I thought, oh, maybe I've asked stupid questions. So I said, okay, okay, thank you for telling me and I really don't agree with that statement at all because it doesn't make sense no I mean I am started testosterone as soon as literally the day after my surgery because I got a an email from you while I was in recovery saying yes your testosterone levels were low before the surgery um and I took it for six months before I even went to the GP to ask her to replace it because I thought there's there's no point in having this conversation yeah um and she did give me it I'm quite fortunate but quite a good GP actually um but she said um we tend to avoid doing this until you're on the top level of estrogen because of the side effects because it's a male hormone and I was like but men don't have ovaries and that's where I'm producing it so so what did she say to that um she was quite happy to give me it and she just went oh well i'd be interested to hear i've seen it's been back to her and she said do you have any side effects i was like other than feeling like fantastic so i feel like i'm in my 20s again it's amazing well the thing is there's a couple of things there one of the things is people with endometriosis often have low testosterone.

9:44And there's been some studies to show that women, even from a young age, have low testosterone and more likely to get endometriosis. So the chances are you've never had the full amount of hormones that you've needed because no one thought or looking. So you probably do feel better than you felt for quite a while with your own hormones balanced. But the other thing is lots of people think you have to have estrogen first and then testosterone. Some people, some women have recently contacted me and said that they've been told they have to have 100 microgram patches or they can't have testosterone.

10:19Now, this is like saying you have to have 100 micrograms of levothyroxine if you've got an underactive thyroid before I can start you on insulin because you've also got type 1 diabetes. Like, it doesn't make sense. You know, if you'd broken your arm and your leg, I wouldn't say, well, let's repair your arm first and then I'll come to your leg in a bit, Laura. like they're just two different hormones we know that testosterone gets aromatase to estrogen but that still doesn't make sense it absolutely makes no sense at all and some women as you know who have regular periods they might have enough estrogen and they might have enough progesterone and they might be very deficient in testosterone so why would i start them a hormone they don't need so it and so anyway so you're on it but you don't have any side effects no well i've been feeling good yeah like even like confidence it's amazing like my friends laugh they're like it's you becoming more manly like getting a job interviewing well it's it's interesting and a lot of women say this to me actually that they they can stand up for themselves more they're more assertive and some people have told me that their partners don't like the way they've become because they're like, no, you can unload the dishwasher.

11:37You can take a bit of responsibility. And, you know, it's quite an interesting thing, isn't it? Because, you know, there is some evidence that you choose your partner differently if you're on the contraceptive pill to when you're not on it because your own hormones are suppressed on the contraceptive pill. And I think some men don't like women feeling well. But you talked about the deuces as well. Now, this is really important because dosing of hormones, all three of them, is individualized. We're all different. But when we use the estrogen and testosterone through the skin, the skin is a barrier.

12:14There's not many hormones or drugs we can put through the skin, but estrogen is one. But there's two things, really. One is that you're young, and we know from studies and guidelines that young women do often even need a higher amount of estrogen in the body just to replace what's missing. But then secondly, some women don't absorb the same amount through the skin. And so you've got two things, really. One of them is you're young, that we've said already. You're under 40, so the chances are you probably need a higher amount in your body to get full optimisation of symptoms and the future health benefits.

12:51But the second thing is that you don't absorb it particularly well through the skin, do you? No. So I had blood tests done and over the sort of course of a patch, at some points it was just above 300 and sometimes it was below that. It wasn't even at 250.

13:16Yeah, I spoke to the menopause clinic about that and they said it doesn't matter, which I know isn't true. They said, well, the blood test doesn't matter. yeah they said that and the fact that it drops below 250 probably every three days doesn't matter as long as it goes above 250 at some point in a patch cycle which isn't as a mathematician I find that incredibly difficult to believe because the average will be lower well this is exactly right and and levels are only a guide as you know like a blood test for anything we do in medicine is a guide and it's in clinical context of course but one of the reasons that you're taking hormones is to try and improve your future health you don't want to get osteoporosis and heart disease and other inflammatory conditions and we know that if you have a normal physiological level which normally is between 250 and a thousand then you're less likely to have increased bone turnover and osteoporosis for example so the blood tests are a guide but yours were consistently low so we increased the dose and the most important thing in my mind as a clinician happened is that you started to feel better yeah yeah like within a week some of the symptoms had started going away and within three weeks I felt fantastic I felt so much better and virtually every single symptom that I had had gone so what symptoms were you getting oh there was there was a long list um I was getting palpitations um migraines chest pain I had a costochondritis yeah with chest pain um I had joint pains uh brain fog feels like it's underselling what I had I I couldn't remember people's names that I've worked with for 10 years.

15:20Anxiety was quite bad. Just really low mood. I was really lethargic. I was finding it hard to get out and exercise, which I've never struggled with. I was snapping at my husband and my son for things that wouldn't normally bother me. I couldn't sleep. I was finding it hard to get to sleep. and then I was waking up in the middle of the night. I think that's my situation. So you're on a higher than licensed dose and you're feeling great. And obviously my clinic's private, so understandably and very reasonably you don't want to be getting HRT from me all the time because hopefully you're going to be living for decades and decades.

16:08So any way that you can get something on the NHS is better. so you've gone to a menopause clinic to try and be prescribed the dose of hormones that make you feel well and are safe and did you manage to get them no um they agreed that the symptoms that i had were most likely low estrogen they acknowledged that on the higher dose that i'm on all those symptoms had resolved and then they suggested i go back to 100 and they would add in gabapentin or benlifaxin? So let me just get this clear. Gabapentin is a highly addictive drug. I've written about it in my book, The Power of Hormones. It's a highly addictive drug that is associated with suicides and death and might help some flushes, but I don't know whether it's got any evidence for any other symptoms.

17:07And benlifaxin is an antidepressant, but you don't seem depressed or you've never seemed depressed to me did they think you were depressed uh no um they said venlafaxin might help with my concentration and hot flushes again which i don't have so you don't there's one symptom you don't have is hot flushes never had a hot flush so but they're giving you treatment non-hormonal treatment for hot flushes that you don't have So did you question that? I did, yeah. And I said, what about all these other symptoms that I get? And they just said, it won't help with them. And that was the end of the appointment.

17:48Okay. And so did they, out of interest, warn you about the risks of taking something like gabapentin or van der Faxin? No. So with gabapentin, I probably didn't give them a chance. As soon as she mentioned it, I said, I'm not taking that. I know how bad that is. With Benlafaxin, I expressed my own concerns. My mum reacted very badly to SSRIs and SNRIs. And I explained to her at that point that they made my mum suicidal. um but she still thought that was a sensible approach for me when I'm not depressed and actually depression isn't a symptom I've had I've had lethargy but not depression no and it's interesting because you know SSRIs probably have got a role and SSRIs probably have a role but really when you look at the risks of of these medications one of the risks is an increased incidence of osteoporosis and probably dementia as well.

18:59Now, because I've already said you're young, if you don't have the right dose and type of hormones, you have an increased risk of osteoporosis and dementia. So you probably, I mean, I might not know you well enough to presume this, but you probably don't want to have a drug that increases your risk of conditions, you're at increased risk of. No, no, definitely not. I actually asked about my growing density because my grandma had osteoporosis. So it's something I'm really scared about because obviously I know this is a long-term thing for me. And they said, because I'm on 100, as far as they're concerned, oestrogen, they wouldn't even consider letting me have a bone density scan because I said, I'm concerned that I'm not getting enough protection.

19:49So the doctor I saw said she would speak to her team but they said no because I'm on estrogen and I exercise so I don't need a bow density scan so I can't even get the sort of comfort that I'm okay at the moment but the guidelines actually for early menopause as in or POI women under the age of 40 are saying that you should have a DEXA scan and it makes sense really to think about that so and what about testosterone and the progesterone were they happy that you were taking those yes the only reason I'm allowed progesterone is because I had endometriosis so this is again very clear yeah this is again very interesting because a lot of women here as you know who have surgical menopause have their ovaries and womb removed people say if you haven't got a womb you don't need progesterone and you're right in that you don't need progesterone to protect the womb that you don't have but you actually benefit from progesterone for your brain your body everything else as well so um and and you're right with endometriosis often you don't want to flare up any endometriosis elsewhere but even if you'd had a surgical menopause for a completely different reason you'd probably still want to take progesterone yeah well and mum has just added it in because i said why aren't you on progesterone it's like i'm taking it so and is she feeling any better on it oh much better yeah her sleep's like it's much much better it's very interesting i challenged what i asked in a polite way somebody at um a conference recently about what we're not advised to prescribe progesterone to women found a hysterically especially when they're young and um and she said well Louise it's not in the guidelines and then she said next question please and then moved me on and the whole audience actually gasped because that is not a reason to do something or not do something because a guideline written by a committee of people who hardly ever see patients and don't think about science you're like how can we ever help our patients yeah it's just ridiculous so there's no reason not to have natural hormones and not to have the right day.

22:10So it's amazing that you are advocating for yourself. And in a sad way, you've had a difficult way of learning because you've experienced your mother. But if you hadn't have had your mother and didn't have any knowledge, then what would you have done? Honestly, I don't know where I would be. I did so much research before my surgery because I was I need to make sure I know what I need because if I go to the doctors they'll tell me this is all you can have and if I just I feel for the ladies that go to their GP and believe what they're told that this is it I'm I've got a friend who said just to sort of manage my expectations to that I might never get back to the way I was before and it just makes me so sad that there's women that think once you've had this surgery it's basically well that's life get on with it it's really sad and one of the reasons I worked so hard is the injustice really and the suffering that's needless for so many millions of women and we've been gaslit for so long, too long, being told things like that.

23:32Even PMS and PMDD being normalized that, oh, you will feel bad for a few days a month, but it's only a few days a month. So get over it, and even quite a few PMDD charities spend a lot of time and money talking about all the talking treatments, all the self-help measures. And of course, you know, having a cup of tea with a friends will help anybody but it won't treat the underlying cause and there's no mention about hormones at all and doctors are so needlessly scared of natural hormones but they'll prescribe the contraceptive pill to anybody and meanwhile it's the women that are suffering and you know what's great about you is that you advocate for others as well and I know you've helped some friends and and that's so important because when you understand it it's very simple medicine it's just really you're just replacing what's missing it's not like like giving venlafaxine you haven't got a deficiency of venlafaxine in your body so it's more complicated medicine really yeah no no I feel at work, if I ever hear any women mentioning brain fog, I'm like, have you got your testosterone yet?

24:48They're like, what? Or someone's got a UTI. Have you got vaginal estrogen? My palatis cast. But it's great because I think that's where the landscape, and it seems to have changed even more over the last few months because women are working it out for themselves. And I strongly feel, especially with some of the negativity I've experienced is it's not about me and my messaging or me or whatever at my clinic. It's nothing about that. It's about women being empowered to make choices. Because if I was doing all this work and then women said, you know what, Louise, I never want hormones. I'm going to carry on with my venlafaxine, gabapenta, whatever.

25:29I would slow down because women, in my mind, just need to have a choice to do the thing that they want. But what is happening is more women are understanding and like you saying no I don't want drugs I would like my natural hormones back first and um and it's that's how we need to make changes I think going forwards for your generation and younger generations because your future health and life could have been very different if you were having all those symptoms and not able to receive hormones you know you've got a good job you've got future ahead of you but that could have been quite different if you were suffering those symptoms every day yeah yeah even on a hundred I did not feel myself I was I wasn't I'm quite fortunate actually that I didn't feel dreadful but I was gradually getting worse probably because my body was just getting like more and more desperate for the hormones I needed yeah and yeah I'm just I'm fortunate that I could come to see you and get the treatment I needed but I worry for the ladies that don't know yeah so that's why this podcast is so important so people can get knowledge um there's lots of information on balance app there's more podcasts and you know just listening today be so helpful for people so before we end I always ask for three take-home tips so if someone's listening and they're about to go and have an operation to remove their womb, their ovaries, their womb and ovaries, any of their reproductive organs, which are likely to relate to their hormones being low.

27:14Before they have this operation, for those people that are listening that have had it and haven't got hormones, what are the three things that you would recommend them to do? Do their research, learn about the three different hormones that they need, find if if they can find a private consultant so that they can if they need to fight the NHS they can fight it feeling good rather than fight it feeling bad um and warn your friends and family because it's a bit of a balancing act and I think friends and family need to know that it can take a while to get back to you. That's really important because sometimes when you're with yourself the whole time you need someone else to validate that you're either improving or you're not improving or worsening so I'm so grateful for your time today Laura it's been a wonderful conversation so thank you.

28:10Thanks for having me.