Hannah

Brief Outline:

Hannah is 19. She started her periods in year 8. They initially were not too bad, but over the last few years they have become much harder. For the first couple of days she gets marked period pain, along with nausea and vomiting that can make it difficult for her to get out of bed. She regularly used to have to miss school because of her periods. She started university this year, and managing her period pain and vomiting away from home was initially difficult, although with time she has developed a support network there which helps. Her period symptoms can make it hard to play sport, concentrate in lectures or enjoy social activities. She plays for a hockey team, and if she is able to get up then playing can help with her pain, but is not always possible. She has seen a doctor and tried a progestogen-only-pill. This reduced the cramping, but caused daily bleeding and impacted on her skin and mood. She was not told much about these possibilities before starting the pill, but having researched this herself online, decided to stop this. She has not had any follow up since this did not help, which has been difficult, and she thinks health professionals should be proactive in following up treatments with young people to check they have helped. Because of her migraines, combined hormonal contraception pills are not an option for her, but she is considering going back to the doctor and asking to trial a hormone coil. She has had an ultrasound scan, but has not been told the results. She thinks working out when period pain is normal or not is difficult and that it would be helpful to be taught about this at school, including that pain can be severe for some people and that there are treatments and options available.

Although she has found looking some things up on social media helpful, Hannah has not found experiences that fully reflect hers, which limited how useful she found it.

And do you get kind of influencer or posts on TikTok or Instagram?

Yeah, I see things like that, but yeah, I've definitely used that for looking for like more like personal opinions of different like what people think and also things like. When I was on desogestrel, I was like seeing what other people's experiences with that were. So, it's a bit more personal than like looking at the science because I don't understand that. I'd rather just know if someone says it's good or not. Then yeah, I’d search up what other people were doing to help it.
 
And did you find things that we useful on that?

Er not massively, no.

When you are looking for it, what sort of things would make it connect with you? Like do you have a hunch of what sort of information you would find helpful to get?

I mean, I've not, like, found as many people that because obviously a lot of people have really bad pains, but I've not found many that actually throw up quite a lot from it. So, I think that's a big factor. Erm, and a lot, because a lot of people do just go on the combined pill and that's just not, I'm not allowed to do that. So, it's there's not many other people like, it's just quite a lack of specifically what's wrong, like my problems if you know what I mean so it’s quite hard. And I'm just, yeah, looking for someone that's like that and then. Because I don't know treatment or like medication that's helped them to try.

Hannah has found looking for information about medication options for period pain a bit difficult because of her experience of medicines that she can’t take or that haven’t helped, and has found it hard to find guidance about what to do next.

And you said that you've done your own research and reading, can you remember where you kind of looked and what you're looking for and how you how you found that?

Yeah. Well mainly it was just all been through like Google just searched mainly like. different like treatments for it or like what you can do. And then when I start, when I knew I couldn't take the combined pill and desogestrel didn’t work for me, I started looking at other types of birth control because that's probably something that I've leaned towards the most because I'm going to go to the doctor soon about the Mirena coil.

Yeah.

Because. I feel like if I go with, but if I go and like say this is something that I'm looking to, they might then go oh OK yeah. Because if I because like I when I went the first time, they kind of just gave me that and then rushed me off and then didn't like and then it didn't work for me and I've got nothing else.

OK, so you did your own research and it was mostly through Google. Were there sites that you tended to look for and did you find it? Did you find them helpful or there are things that you would like to have found and weren't there, I guess?

Yeah, I think I looked a lot on like NHS websites. I can't remember any of the websites specifically, but there wasn't really… It would mainly just be like saying things like this could be endometriosis and not much else. And then the like treatment options. A lot of them said mefenamic acid, which hasn't worked for me or going on the pill, which again hasn't really worked for me. So, there wasn't anything else.

Hannah found managing her period pain difficult when she first started university, because she didn’t know people well so it felt a bit “isolating”. With time, she has made good friends which has helped.

How has starting uni been with having to kind of? has that been tricky to manage when you've been away from home?

Yeah, especially because it's got really bad since I've been at uni, it's been quite hard because it like, knocks me out for at least a day and I can't. I don't have my Mum and it's like friends. I've only just met. It's quite hard because I'm just like stuck in a room on my own being like this. It's got like, it's better now because I've got a good group of friends and stuff, so I don't mind it as much, but especially in like the first time it happened was a bit isolating. She's still. Yeah. So, it's not been great.

Hannah heard about mefenamic acid from a relative which influenced her decision to go and see a GP.

And can you remember what kind of triggered you, or how you need to or decided to go to the doctor, or whether anyone suggested that?

I think it actually was. I think it might be [relatives name], I think I told my Mum about it and she went to [relatives name] and then that's how I got on starting mefenamic acid and then. I I'm not sure what triggered me to go to actually go to the doctors, but I think it was getting to the point where I was like, feeling really sick and just couldn't leave my bed. And it was just kind of like if I knew my period was coming, I was like, right, I can't do anything for that day and that day because I just have to cut them out, because I know that won't be able to leave the house, and stuff. So, that was the point where I was like, I can't do this anymore. I'm going to go to the doctors.

Hannah thinks GPs should help young people by giving options and in making clear follow up arrangements after trying medicines for period pain, because it’s hard to do without guidance.

So, your decision to go to the doctors was when it was really starting to stop you doing things? Do you have any kind of reflections or recollections of what that of how what those series of consultations felt like, and whether there's anything that was helpful or anything that you found trickier? We've talked a bit about the scan and I think that's really that's a really good example.

Yeah, yeah, that was good and I think. Um. I think that one like I think the hardest thing is that making the doctors like actually pay attention to you. Like when I'm at the doctor's, it's fine. But it's like getting appointments and getting them to have like check-ups because obviously I took myself off the pill in… I think it would have been like February, a year ago. And then since then I've just been, it's just got worse and worse. But like I've not done anything about it because I like even when I was on the pill and like my skin was getting bad and I was bleeding all the time, it was quite hard to get them to actually do something and like find the right thing, if you know what I mean?

Yeah. And does that have an impact on how you feel about kind of maybe going back the next time?

Yeah, it's ‘cause you just have to be quite persistent when it's like, I feel like this doesn't work. I wouldn't like…Obviously I'm not going to give up because I don't want to be in pain, but it's like it's quite frustrating because I just want to find something or have them help me look at options and try all those options instead of just putting me on one thing, and then just presuming that I’m then fine.

So, when you’ve tried something, did you ever have a kind of plan about what to do next?

No, it was just try this, and then yeah, see what happens.

Hannah thinks doctors should follow up with young people if they have tried a medicine for period pain, and check in to see whether it is helping or not.

Yeah, yeah. I think, well, listen to basically what they’re saying. If they say they're in pain, actually look into it and also checking up on people, when they're like a few months down the line to see if what they're on is working because especially as a young person, if you're like busy or you might just think that didn't work for me. So, whatever, I'll just leave it. But if you had someone coming to you a couple months later saying did this work and if you can then go, no. Well then you can get another appointment to then find a different option and then they like help you do that is a lot easier than having to do it all yourself.  

Hannah has migraines so she can’t take the combined pill (oestrogen-containing). The progestogen only pill, helped with her pain but had side effects. Wants doctors to give more information about side effects and follow up after trying treatments.

Then I went to the doctors and looked at options and went on Um. The progesterone only pill, I can't.

Desogestrel?

I'd have to. Yeah. That's just it. And you remember? Yeah, I was on that for four months, but it was. It stopped my period. No, it stopped the cramping. But then I was just on my period for four, like, basically three months straight. My skin got really bad, and it didn't help my mental health. So, I kind of came off that because it wasn't help- like it was making everything else worse. And then when I came off it, the doctor said that it might, erm like, settle down a bit. So, like, I mean, off it might have been sorted them and they were fine for me, like, a couple months. but then within this last year and especially the last three months, they've got really bad again where I'm like throwing up and feeling like I'm going to pass out and have to be in bed for like at least a whole one day, possibly 2 every time I get a period.

And I've not, because I can't go on the combined pill because I get migraines. So, then they say I'm not allowed to go on it. So, I'm kind of limited with options.

And I've taken mefenamic acid or like since it started and it used to help, but it doesn't really help anymore.

Yeah, they didn't really tell me much about it because I used to have very bad skin when I was like younger. So going on the pill, that was my biggest concern. So, I asked them about that and they said that that was not like not an option. It like could be a side effect, but they didn't tell me that there was a chance that I was going to be on my period for like 3 months straight. They didn't say anything about that. And then when I did call them up about that, they put, I can't remember what it was called, but it was something to try and stop the bleeding. It just didn't work.

So, then I just by myself came off it.

Tranexamic acid?

Yeah, that one. But it didn't work, but yeah, they didn't say it. Like, they didn't tell but me any side effects, apart from me asking about skin. They didn't like, they didn't tell me that without me asking.

But it did help the pain?

Yeah, I didn't. Yeah, I didn't have any cramping or throwing up. I was just, like, bleeding the whole time, but without any pain.

Hannah has stopped contraception treatment because she didn’t find it helped. She had an ultrasound scan, but has not heard about the results. She doesn’t think the doctors understood that what she wanted was to know if there was something wrong.

Yeah, well, because I when I got put on the pill and then I had, then I came off it. They didn't really do anything to find me another like alternative because it's like they've never come back, or anything. And it was quite, yeah, like because I got a scan, it- I don't know what the scan is called, but for endometriosis, but they never came, got back to me on it or, like, gave me any advice on it. So, I still don't know what the result of that was because I don't think they really understood that it was like I actually wanted to know if there's something wrong.

So, did they offer? Can you remember how the scan came up? Was, was... Did you ask for it, or was it offered?

I think it was offered.

And was that something that you'd thought about before? I mean, had you had anybody ever said the word endometriosis to you in school, or education?

Not in education. It was more something I found out myself from, like research. And if, like I said to someone, ‘oh, it's this bad,’ They might be like, ‘oh, it could be endometriosis.’ But I never got. I didn't know what it was through education.

Was that from friends, or did a doctor ever mention it to you?

Not a doctor until they referred me for the scan, but I don't think they ever specifically said endometriosis. They just put me through for the scan.

Was it an ultrasound?

Oh yeah, if that's what it’s called?

Is it like a little a kind of probe, like a tampon that went in the vagina? Or was it just on your tummy? Yeah.

Yeah, both.

OK, OK. OK. And that worry about whether there might be something with it?
Was that something you'd been thinking about? Was that something that had been important to you?

What, that I had endometriosis?

Oh yeah, or that there might be something causing your pain.

Yeah, that does because it's like seeing, if I see other people I'm like, it just like, I question why I'm like this and other people aren't. I'm like, is there something wrong? Or is it just, I don't know, the way I am?