Latest / Women of the Well | Women's health, done differently / The problem with "wonder drugs" for endometriosis and pelvic pain

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The problem with "wonder drugs" for endometriosis and pelvic pain · Women of the Well | Women's health, done differently

• 0:56
  Hello, and welcome to another episode of Women of the Well.
• 1:00
  I'm Peta Wright.
• 1:01
  I'm Thea Bowler.
• 1:02
  And I'm Sam Lindsay-German.
• 1:04
  We thought we would do a little bonus episode today about something that we've been ranty about the last few days.
• 1:10
  many of you might have heard or seen in the newspapers or online, headlines about the government subsidizing or putting on the PBS a new miracle drug for the incurable, debilitating, progressive disease of endometriosis that is going to be life changing and help so many women's lives.
• 1:32
  And well, on the face of that, when you read it, that sounds pretty good.
• 1:37
  We, having had lots of experience in this area, have maybe got some other insights we wanted to share that we've kind of been ranting and cross about for three days.
• 1:47
  So we wanted to just sort of unpack what this actually is.
• 1:51
  What is this drug?
• 1:52
  Is it going to be life changing for lots of women or does this kind of announcement and this way of dealing with women's pain, is it actually going to part of the problem of making things worse that we see on a day to day basis?
• 2:06
  Absolutely.
• 2:07
  Does it lead to more focus on the lesion of endometriosis and less focus on the woman as a whole.
• 2:16
  problem with that is that a lot of evidence tells us that, as we talked about a lot before, that presence or absence of endometriosis has a poor correlation with pain.
• 2:26
  but other things like, Fear, immobilization, and overprotection of our nervous system have a big correlation with pain.
• 2:34
  And this is why, so often, drugs that are hormonal contraceptives, which this drug is, and I'll ask Thea about it in a second, and surgeries to just target lesions or bleeding or endometriosis, fail women.
• 2:49
  And this is why we see so many women who've had all that and they're not any better.
• 2:52
  They're often entirely missing.
• 2:54
  what the true drivers of a person's pain is.
• 2:57
  Which as you say often resides in the nervous system or the muscles.
• 3:01
  So what is the drug?
• 3:02
  The miracle drug.
• 3:04
  The drug is Visanne, or Dienogest is the name of the hormone.
• 3:07
  it's actually been around for a very long time, probably 20 years or so.
• 3:12
  all the patients that I saw this morning who were talking about it were shocked to hear that it's like, it's actually not a new drug.
• 3:17
  It's a drug that gynecologists Um, it is a dose of progesterone that often switches off ovulation, so women will often stop having a menstrual cycle, but it's not marketed as a contraceptive.
• 3:33
  So it can't be used to prevent pregnancy.
• 3:37
  So it works to suppress periods and the idea when you read stuff about it is that it shrinks endometriosis lesions.
• 3:44
  The reality of it is that it, there is no evidence that it is any more effective than any other hormonal contraceptive drug that turns off ovulation or reduces oestrogen or stops menstruation like the pill, like even the most old fashioned pills.
• 3:58
  And in fact, the head to head studies show that there's really no difference between them at all.
• 4:03
  Okay.
• 4:04
  And the thing about it is that the same side effects are still there.
• 4:07
  In fact, I would probably go so far as to say with the oral combined pill, because there is estrogen going back in it once you've turned off the ovaries.
• 4:16
  And so you don't have estrogen, you have to give it back.
• 4:20
  Visanne doesn't give back the estrogen.
• 4:22
  So you have even lower estrogen on this drug.
• 4:25
  Um, and often.
• 4:26
  Anecdotally, I see women who find it really intolerable, especially for mood.
• 4:31
  The other downside of it, I think, like, I would agree with you that, I barely ever prescribe Visanne anymore purely because patients feel terrible when they take it.
• 4:40
  From a mood perspective, yes, it might turn their periods off and for some, People, that is a necessary part of helping them to manage their pain, although there are many, many other ways of doing that.
• 4:50
  but the other thing that we really commonly see, and you could tell the story about a patient you saw this week, is that when we're on medication to turn off our cycle and turn off ovulation, we're not making our own estrogen.
• 5:01
  And particularly when we're not also adding back estrogen, like we are in the pill, even though that's often not enough either, there are certain organs in the body that you know, regular supply of estrogen and one of those is the vaginal and vulval skin.
• 5:14
  And so it's very, very common in these patients that we see over time that they start to develop painful sex.
• 5:19
  and often, you know, atrophy, which is thinning and inflammation in the vulval vaginal skin.
• 5:24
  And tears and things like that.
• 5:26
  So I saw a lovely lady yesterday and this was, you know, to illustrate the point.
• 5:31
  So she had had period pain, she had early diagnosis of her endometriosis by going to see a gynecologist at 18, 17, 18, who she had her laparoscopy, was diagnosed early within two years of having painful periods, had superficial endometriosis, which we've talked about here before.
• 5:50
  May or may not represent a disease process and may be part of the normal wear and tear of periods.
• 5:55
  And is poorly correlated with pain?
• 5:56
  Poorly correlated with pain.
• 5:57
  Had that removed, was advised to go on the pill or some form of contraceptive and did it and it felt, she didn't feel very good so she went off it.
• 6:07
  Then her pain came back, which often does with surgery, she had another surgery to remove her superficial endometriosis.
• 6:15
  And then was advised to go on, I think went on Visanne at that point.
• 6:19
  And she said, of all the things, it was the absolute worst.
• 6:22
  I could barely tolerate it for two months because the mood side effects were so bad.
• 6:28
  Low libido, et cetera.
• 6:29
  when I saw her, she's now on another progestin only, pill.
• 6:33
  It's a bit different, but still similar.
• 6:35
  Low estrogen levels turns off ovulation and stops the inflammation of periods, which is why it can sometimes be helpful.
• 6:41
  But now, Her main problem is like severe pain with sex and tearing in the vagina.
• 6:47
  She's 24 years old and has to use Vagifem, which is a vaginal estrogen, like women may use in menopause.
• 6:57
  So, feels totally disempowered and totally disconnected from her body.
• 7:02
  and after we talked about everything, had decided to come off everything, and I've had several patients this week who are on the other side of that, who've come off everything and have come back to see me and are like, Oh my goodness, I feel like, and are dealing with the nervous system and the other things that we talk about a lot and are feeling so much more themselves.
• 7:20
  Yes.
• 7:21
  One of my patients who came off hormones this week was on a marina plus.
• 7:24
  It's some other progesterone, she feels the best she has in her entire life.
• 7:28
  Can I just ask, so what is it about this progesterone only that's causing the mood to change?
• 7:34
  to drop so much?
• 7:35
  sometimes the synthetic progestin itself and also because it turns off our ovaries so we make lower estrogen or no estrogen and low testosterone as well and limited progesterone and all of those hormones affect our brain in positive ways.
• 7:50
  so it's really common that people will have mood issues.
• 7:52
  It just doesn't seem to make any sense.
• 7:54
  Yeah, any sense to me that we would do that to ourselves or someone would, you know, suggest to do that because, yeah, it would just add to the whole pain body.
• 8:04
  And it does actually, and there's also evidence, we've probably talked to you before, that having low estrogen and low testosterone can actually increase that central pain that people experience and because low mood and anxiety is associated with more pain.
• 8:18
  Yeah.
• 8:18
  Okay.
• 8:19
  there's also that, but the thing is women are just told, well, it's endometriosis.
• 8:24
  We have to put you on this so you don't get periods and we don't get, growing back of lesions.
• 8:29
  and it's entirely a lesion based, where the lesions, as we've talked about many times, people can have the lesions and not have any problems because we have to treat the whole entire person.
• 8:42
  think about the fear that that instills in a person.
• 8:44
  Like you have This disease for which you have to take this medication indefinitely in order to prevent it coming back.
• 8:50
  Doesn't matter if it makes you feel terrible.
• 8:52
  You have to be on it.
• 8:53
  And there's actually no evidence that that is the case.
• 8:55
  And there's no evidence that these drugs actually do prevent.
• 8:59
  Endometriosis from growing back, if that's all you're going to be talking about and it's kind of irrelevant because it's about the quality of life and if you're using medications or treatments like surgery that is actually making your quality of life worse, the treatment for so called disease should not be worse than, The disease or the thing that you originally went to the doctor for in the first place and that is what I see so often for women.
• 9:25
  And that's what we were talking about before, which is that, you know, often, you know, People are put on a medication to treat a disease.
• 9:32
  The effects of the medication are worse than the disease itself, but instead of stopping that medication, they'll be put on another medication to treat those side effects.
• 9:39
  What we see really commonly is they'll be on a pill or progestin like Visanne, and then an anti depressant as well, to treat the mood side effects of the original drug, which makes absolutely no sense.
• 9:48
  No sense.
• 9:50
  And the whole point is that they can't help themselves because they're in that depressed state because of being on the progesterone and so it's, it just doesn't make any sense whatsoever.
• 9:59
  and then the side effects of the antidepressant.
• 10:01
  Yes.
• 10:01
  And it's all just taking you further and further away from yourself.
• 10:04
  The wheel of stupidity.
• 10:06
  Yes.
• 10:06
  The other thing that I think, we should be.
• 10:09
  wary of is the kind of politicization of, the way that it's rolled out, you know, like, as we said before, this is a drug that has been available.
• 10:19
  It has been a bit more expensive, so this will make it more available to people.
• 10:22
  But I think, there's, definite benefits to the politicians who are announcing this, change and also benefits to the drug companies.
• 10:31
  Yeah, massive benefits to the drug companies who make this, but why them over all of the other drug companies which have Similar, efficacy for dealing with period pain as this particular drug.
• 10:43
  so it's a win for that particular pharmaceutical company and for the politicians who now look like they're doing something for women's pain.
• 10:50
  I understand this step in this world, of advocacy in pain, and I understand how the people who are working very hard to, provide more options for women who are suffering get to this point, but I think that it misses the point entirely.
• 11:08
  And I think we have to be very careful because, yes, well, it provides better accessibility in terms of, financial accessibility to this particular drug, where we would love to be seeing change, but we don't.
• 11:20
  Is, having more Medicare funding for long appointments, for education for young girls, about their cycle, for physiotherapy, for nervous system based care, to reduce the fear, to reduce the overprotection.
• 11:35
  That actually does have a huge, correlation with pain.
• 11:39
  and I think all of this actually adds to the fear and increases pain.
• 11:42
  And then, the other thing about this article or these articles that you read in the headlines are, pelvic pain is increasing and hospital admissions are going up by 40 percent or whatever.
• 11:54
  And it's costing this much more.
• 11:56
  And we always talk about, like, the thing is, hospital admissions are going up because we're telling people that they have a disease for which they need treatment that isn't effective, and then they need more treatment for that.
• 12:06
  So they have to have more operations and more hospitalizations, which costs more money.
• 12:10
  And because doing this surgery is not getting to the point, emergency department admission still occur at the same rate as whether or not you've had surgery or a diagnosis.
• 12:21
  And then you've told everyone you've got this lifelong incurable debilitating disease, which they take on board.
• 12:27
  And then their whole lives become about managing this disease.
• 12:31
  And I think for the vast majority of women who experience pelvic pain, whether or not they have endometriosis, that way of viewing it is actually incredibly flawed and contributes to the whole ridiculousness of the paradigm and the money in the hospital admission.
• 12:45
  Totally.
• 12:46
  And drives up their pain.
• 12:47
  Correct.
• 12:48
  it's not only missing the things that make a difference, but the treatment paradigm, yeah, increases that nervous system dysregulation and makes it worse.
• 12:58
  So I think we have to be very careful, and I guess the thing is the media, social media, newspaper articles, television media, none of it is very good at Getting to the nuanced, crux of all the stuff that we see on a daily basis.
• 13:12
  And I would say this, if Visanne or any of these medications or surgery works for you, fabulous and I'm so glad that this is available more accessibly for you.
• 13:22
  But, in our experience, we are constantly seeing women who have had Multiple laparoscopies have been on multiple drugs, and they do not feel better.
• 13:31
  In fact, oftentimes they feel worse and further away from who they are.
• 13:36
  And so if that is you, that's who we're talking to.
• 13:38
  Yes.
• 13:39
  so for those, you know, if there's someone listening who is on that drug and is thinking, gosh, I do have some of those symptoms, or if it's someone who has been excited because they thought, oh, this is the drug that might be able to help me.
• 13:51
  what do you think that they should do now listening to what you're saying?
• 13:54
  What can they do?
• 13:55
  Well, if they're taking it and they are thinking that they might like to come off it, they can talk to Their GP about that.
• 14:03
  Just come off it.
• 14:04
  They can.
• 14:04
  Own your body.
• 14:05
  Come off it.
• 14:06
  They can absolutely come off it.
• 14:07
  some people often feel very worried about doing that.
• 14:10
  Fearful.
• 14:11
  Purely because of the way that the, I guess, the medical paradigm around endo teaches people that periods are bad and scary and part of the problem.
• 14:22
  And so I think, you know, absolutely people can stop.
• 14:26
  You can stop and you can have your bleeds and that can be totally fine.
• 14:29
  It's not going to increase a risk of recurrence of endo.
• 14:32
  that has not been shown in any studies.
• 14:34
  I think if people are thinking about the news articles and wondering if they could or should take it, they certainly can talk to GPs and gynecologists about that.
• 14:42
  But I guess I would say to them that, you know, if you are struggling with period pain, or pelvic pain in general, really finding a gynecologist or finding resources that help you to really understand your body and understand what's going on, understand your nervous system and think about pelvic muscle tension and all the other drivers of pain that these things are going to be far more important than A quote unquote wonder drug, which is purely going to turn off your period and nothing more.
• 15:10
  and there are other ways, like, you know, again, a Mirena isn't for everybody either, and that's the IUD, but it has just as good efficacy at reducing pain as this particular drug that is the wonder drug as well, but without turning off your ovaries.
• 15:24
  but I think the key thing is understanding that if you're suffering from pain, it's not that we're saying that it's normal, or that it's okay.
• 15:35
  We're not saying that.
• 15:36
  We're saying if you're experiencing debilitating pain, something isn't right, but it's going to be a bigger picture thing that isn't right.
• 15:43
  And that something that isn't right, isn't going to be, fixed or managed by taking your power away and simply operating on you multiple times, telling you that you need an operation every five years and, putting you on a contraceptive drug.
• 15:56
  if it works for you, fantastic.
• 15:58
  But if it doesn't, you have to look bigger picture.
• 16:01
  that is the thing.
• 16:02
  And looking at ways that connect you back to your body and back to the idea that messages from our body like pain are messages that Things are too overwhelming for our nervous system, and we can completely address that.
• 16:16
  but we need to view symptoms as messages, and our body's doing the right thing, rather than the enemy, where we're at constant war with our bodies, because that never works.
• 16:26
  works.
• 16:27
  also I would say, healing pelvic pain is a book that I've written that goes through all of the different medication options of which I do use from time to time, but it is not, none of them are miracle drugs is what we're trying to say.
• 16:38
  we just don't like the simplistic nature of how things are reported.
• 16:43
  we think that women deserve to understand the details and all of that.
• 16:48
  facts and information when they make a decision.
• 16:51
  That's right.
• 16:51
  so healing pelvic pain is a really, really good resource and you can find that on our website or Amazon as well.
• 16:56
  and any questions or anybody's experiences that they've had, we'd love to hear from you.
• 17:01
  Um, and can email us at hello at Vera wellness.
• 17:04
  com.
• 17:04
  Did you or, messages on our Instagram at, Vera wellness.
• 17:09
  com.
• 17:10
  Thank you.
• 17:10
  Our next episode will be less ranty, we