Young people's experiences of periods and period pain

Yes. I think it’s really important because, unfortunately, like things like FGM (female genital mutilation) impact so many women and it is something where if it’s impacting this many women, you have to be aware of it as a health professional because... And it’s interesting ’cause I went to one of my GPs in [city name] and they did ask if I had been subjected to it. So, the fact that it was even asked as a question was pretty good because it showed that they were being as, like, inclusive as they could. It wasn’t just: you have to be the most healthy person in the world, otherwise it’s bad, you know? But like they would ask all the different things that you might go through: “Do you go through this condition? Do you go through that condition? Have you had this experience? Have you had that experience?” It’s important because everyone’s experience is different, but also so many people have the same experiences, you know? So, it isn’t just a case of like one percent of the population go through this. But no, it’s a lot of people, but a... a lot of different people. So, someone might have both PCOS (Polycystic Ovary Syndrome), but also have been subjected to FGM, or someone might be going through hormonal therapy, so they might be getting testosterone and they’re transitioning, but they also have infertility, so for them that’s another thing. And being intersectional is important, yeah.

Recently, I think for like the past year I’ve started to get really bad cramps as well. But before that I didn’t usually have it. It’s just starting like this year, year and a half.

OK. And can you tell me a little bit about that and what that feels like?

Oh, so it’s like... you know like below your stomach?

Mm.

Like, there, it’s like... feels like your muscles are being really tense, like they’re being really pulled, and then sometimes like my back will hurt. And also ’cause like I’ve got scoliosis as well, so the pain of scoliosis, plus the cramps, like it just hurts double.

Mm, so that’s really tricky. So, it aggravates your... the backpain that you were already having?

Yeah.

OK. And how... does... does the pain add to the kind of impact of the periods?

It’s ’cause scoliosis, like my back, as it is, it already aches. And then I feel like... ’cause my body just goes a bit more weaker, it just feels like all my muscles are just tight on my back as well, so it just doubles on it.

Mum: But once... once we took... when I took her to hospital, and we were worried that it was a... you know, a constipation issue. We weren’t sure if it was period or if it was constipation and we kind of wanted someone to tell us, really.

Leila: We doing

Mum: And the thing he prescribed, or was going to prescribe, was something that can cause... He said, “Now, you have to be careful with this that I’m going to prescribe, it can cause constipation.” And I thought, ‘oh, my God, are you not listening?’

Leila: Oh, my God, ra-ra-ra-ra-ra-ra-ra-ra-ra.

Mum: And it... And I know it’s, you know, all the different comorbidities are hard to, you know, not exacerbate one problem while you’re fixing another one. But I just thought, ‘oh, man, you’re really not understanding.’ And it can be frustrating; it can be really frustrating.

Yeah.

Leila: And they did it so well. Thank you so much.

PMS (Premenstrual Syndrome) and PMDD (Premenstrual Dysphoric Disorder), are terms that refer to a, a large spectrum of mood changes that can happen in your menstrual cycle.

So many people experience mood changes during the cycle. But for some people these can be really severe and significantly impacts on quality of life and ability to do things in their life. If you think that might be relevant for you, there are lots of different treatment options. So, it's definitely something that's worth discussing with your doctor.

Probably quite annoying, I’d go to the nurse ’cause I felt really ill, and then they like wouldn’t send you home ‘’cause it’s just your period’, and I think that’s like quite frustrating, ’cause it’s like I’m still in pain, like you’re still in pain, even if it’s like a... like a normal thing to happen. And like sitting in... through a long class, I’ve got ADHD as well, so I’ve got bad attention, so sitting through a long class, already not being able to like pay attention, and then alongside that having like quite like pain and headaches and feeling really sick, like I think that’s quite... quite debilitating.

Dad: And... and obviously can’t take things orally,—

Can’t take orally.

Dad: —so it’s... got limited options.—

And the... and the suppository forms, you’ve tried the paracetamol,—

Dad: Yeah.

—which does... the botty pill helps.

Dad: Yeah, botty pill does help, yeah.

Mum: But paracetamol does—

But paracetamol and Nurofen upset the stomach.

Mum: Yes, something weird. We’ve... I’ve tried giving it to her orally mashed up in things, Nurofen, and that gives her a terrible tummy.—

Leila: Yes, yes.

Can you take syrups if it was like Calpol or...?

Mum: No.

Dad: No,—

No, no, no medicine, no.

Dad: —ooh, no, no, it comes straight...

[overtalking]

Dad: Stand well clear, yes.

Mum: And we have told them that in hospital, and they take no notice, give it to her anyway, and then end up with it on their shoes.

Dad: Yeah.

Mum: Yes.

You can but try.

[chuckles]

Mum: Like I say.

We all need to learn the lesson about listening sometimes.

Dad: Yes, listen to the parents, yes.

Mum: Yes, yeah, “don’t try that, no, please... oh, dear.”

OK. Yeah. I think—

Mum: And they’re like: “Oh, no, I can squirt it down the side of her mouth,” and you go: “I really wouldn’t.”

But that there... there are lots of aspects of treatment, and not just periods, but treatment that I think... just like when she haemorrhaged that they... they said, “Oh, she’s got to gargle with this,” I said, “Leila never gargled with anything.” “No, but she mustn’t swallow it,” I said, “Well then, don’t give it to her,—

Dad: No, don’t give it to her.

Mum: —you need to think of a different tre...” And I think that applies to periods that, OK, we can’t take oral painkillers.—

Leila: We don’t need pills, do we?

Mum: We need a different thing. And I think that’s... that’s one of the things that’s really difficult for people with learning disabilities because the ordinary standard treat... you know, [sisters name] might take an ibuprofen for a pain, but that doesn’t work for Leila. But we need more alternative.

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.

What sorts of things or what sort of health conditions might you think about if you saw somebody with health with, with really having periods from a, from a bleeding point of view?

So yeah. So, when you attend for heavy periods, you can usually see your GP first, but sometimes that can lead on to assessment by other types of doctors. There's lots of different causes for heavy periods. And also, multiple causes can coexist at the same time. From my side of things am I know as a bleeding disorder specialist that when periods are heavy from when they start, it can sometimes be that those patients or those girls are more likely to have an underlying bleeding disorder, which essentially is a problem with the blood in the way it clots.

And the things I look out for patients when they're presenting, or girls that are coming to me with problems of their periods that may be necessary to see me, would be if there's a family history. So if your parents, your siblings have bleeding problems, and particularly something's asking your mum or sisters, because sometimes periods can be really normalized and if all your experience has been of people around you having heavy periods, you don’t necessarily notice them as being heavy. If you've had other bleeding symptoms like nosebleeds or gum bleeding. Again, that's another thing that maybe flags up that there might be something else going on. If that is the case, then there are tests that can be done and that can one help us treat your periods but also prevent bleeding, complication or bleeding problems further down the line.

There are lots of different bleeding disorders that some are quite rare. The most common is one called Von Willebrand Disease (VWD). The reason I mention it is because people think of bleeding disorders, they often think of haemophilia and think of the fact that haemophilia affects boys, Von Willebrand Disease (VWD) is the most common bleeding disorder, and it has a pretty even spread between men and women. So, it's just something to think about. And as I've said, if you're worried, it's no problem to be seen.

What sort of tests might you do to look into a bleeding problem from a haematology point of view?

So, from a haematology point of view, we usually take some blood tests. So, some of them are just to look at the amount of blood cells in the blood. And then there are more specialist tests that can look at test how well the blood clots that tend to be when I get involved. What I would say is that we would usually do some of the tests alongside, like ultrasounds that you can have from other conditions, because we're always remembering in the back of our mind that two things can happen at the same time. So, it's just to make sure we're not down a rail road of one school of thought.

So, endometriosis is really common. About 1 in 10 women have it. We know that you can have it when you're younger. For other people, it develops when they're older. The endometrium, that's the tissue that lines your womb. So that's the tissue that grows each month and that you then shed when you have a period. Endometriosis is where that tissue ends up outside of the womb.

So, the most common place we find it is on the lining tissue of your pelvis. But we can also find it on the bladder, on the bowel, on the ovaries, or sometimes in sort of further away places. For some people, they don't get any symptoms from that at all. But that tissue does grow each month and it does bleed in the same way the lining of the womb in the right place does. And so, we do find that for other people that will cause some inflammation and some irritation and some pain, and that can then go on to cause some scarring and some thickening of tissues. And so that's what endometriosis is.

Adenomyosis is a related condition. But this time the lining of the womb stays within the womb. It just ends up in the muscle layer of the womb. And again, it still behaves exactly like the lining tissue in the right place. So, we see that it grows and it bleeds. And muscles don't really like that happening within them. So, they get a bit sore and bruised, a bit like if you had a little tear in your calf muscle, for example, when you over exercised.

And so, people with adenomyosis will often find that their periods are really heavy and really painful. I think the important thing to know, though, is that both of those conditions are much less common than just having period pain or heavy periods, for example. So only 1 in 10 people will have endometriosis where it was 30 to 40%, so 3 to 4 out of ten will have period pain bad enough to interrupt their life.

So just because you have period pain doesn't mean that you have an underlying condition like adenomyosis or endometriosis.

But what's important is if you have symptoms, then come and see us. We're happy to see you and we're happy to offer treatments. Whether or not we find a disease underlying this.

Once they started taking it seriously, it was quite good because there was quite... there’s quite a few nurses who also like work in the like health centre on site, and yeah, I feel like they were all really understanding. And then when I... whenever I used to explain my pain to them, they would often be like: “Maybe you need to see a gynaecologist,” but the GP would always say like: “You need to... you need to look at all of the routes that are possible.” So, like I saw an endocrinologist, he thought it was IBS for a bit, so I kept a food diary for like six months. Yeah, there was loads of little things that they thought it could be, and I saw loads of different specialists. And then eventually I saw a gynaecologist. But even she wasn’t very good at the beginning, and then I switched quite a few times. I saw six in the space of from September until March, I saw six different gynaecologists because... And this was... they were all privately because they hadn’t been taking me seriously. They just like... like: “you’re young, like you’re... like it’s fine, like it’s just normal period pain.” Yeah, so I feel like that was quite tough as well.

I think that sounds a extraordinary experience.—

Yeah.

So you had... you had some months of seeing kinda other specialists, so endocrinology and gastroenterology.

Yeah.

OK, so stomach and endocrine—

And a urologist?

And a urologist.

Just two, yeah.—

So, is that ’cause you had pi... bladder symptoms and...?

Yeah.

OK. But then you finally... So can you tell me about your kinda journey through those six [er] consultations?—

Yeah. I feel like that was really like a weird like bubbly time like now, because it just feels like really like a long time ago, but it really wasn’t that long ago. So, when I started in September 2022, think '22, I started seeing consultants privately, like literally from September. And then I’d seen one gynaecologist and she didn’t take me seriously at all, and then she gave me... I can’t remember what she gave me, but it did not help. And then when I took it to the GP, he was like: “I don’t understand why she’s given you this.”  Then he said maybe I should see an endocrinologist, which then I booked to see, because my Mum said that if we went to see another gynaecologist, they might ask if you’ve seen this other specialist, and you can say, “I’ve already done that,” like: “this is where I need help and you need to give me like your advice, don’t push me off to someone else and make me someone else’s problem.” And then I saw another two in between in October and November.

Gynaecologists?

Yeah, two different ones. Then in Decem—

And... and what happened? Can you remember what...?

Yeah, they weren’t very understanding either. And my... yeah, my Mum just wasn’t fine.

So, did your Mum come to all of the appointments?

Come, yeah, she came to all of my appointments, yeah. And, then November I also saw a urologist, but this was on the NHS, and he was like: “I don’t think your issue lies, like, with me and my department here.” I’d also seen a gynaecologist on the NHS in November, and she was quite good, but she’d just given me the pill; I think it was the progesterone-only pill. So, I feel like she was quite good, but regardless of who you see, I feel like there’s a process that they just have to go through it and... [coughs]—

Do grab your glass of water.

—I feel like often that can be quite tough if you’re having to take like four month... four-month gaps in between like seeing—

What, to try different treatments? Yeah.

And if like they’re not working, and having to wait until that appointment can be quite tough. And I feel like by this point me and my Mum kind of knew what we were talking about in some ways, like... like we knew what we wanted from her, if that makes sense? And like the first time I went to see... like she gave me a diet sheet and my Mum was just like: “This just isn’t like good enough,” like: “we need more support than this.” In December I went to see a gastroenterologist and he was quite nice and he also said that: “I don’t think your issue lies with me,” either, so then I continued to keep my food diary. Then I saw the same gynaecologist in February, and me and my Mum had taken like a book of like questions and like things, and she just wasn’t very happy with like what we’d said. I just... I think she might have thought that we were a bit like... a bit too much, like coming on, if that makes sense? So, like... so I don’t think she was very like impressed. Then we saw... then the whole idea of having a laparoscopy was up in the air. So, then I saw someone else privately in March.

So that was the NHS consultant?

Yeah,—

And that was what... yeah.

—and then... yeah, and then I don’t think she was very happy with like the way me and my Mum went about it because we just like... I feel like we were quite full on with questions and things, and like... Yeah, I don’t think we came off as demanding, but I just don’t feel like we came off with loads and loads of questions, and sometimes that can be a bit overwhelming as well for like the consultant if... yeah, like... yeah, so I feel like that was a bit of a weird patch.

And then in March we’d seen someone else privately because at that point teachers at school were also like: “Maybe you should have a laparoscopy done.” So, we saw this consultant privately and he’d done an ultrasound and then he’d diagnosed me with adenomyosis. Yeah, and then we spoke to him and then he suggested that we stay on the NHS with that consultant, because she was quite good, which, yeah, I also thought that she was quite good. So, we stayed on the NHS and then I had my laparoscopy in June. So in between, I did struggle with pain, but like I had... I did have that laparoscopy in June, which I think did help.

And then what did the laparoscopy...?

So, endometriosis and adenomyosis, yeah, yeah.

And I was really struck by what you said about the day you got the letter with your result, that it was a... a great day. Can you tell me any more? Or... or a little bit about what that meant to you, and what made it a great day?

Yeah.—

Does that make sense? Because that feels really important.

Yeah. It was kind of, again it... after three or four years of so many dead ends and tests with no good results, and not hearing back anything, and being told it was nothing, or that I was being dramatic, or... and then finally getting a letter and saying, actually, it is something, and that it is something important that we need to look at, it was just... I... I’d usually, when there was a letter from the NHS, it’d be: “Thank you for coming to see us,” like, and that’s it, and nothing else. But kind of getting... actually getting a result and being told that it was something, and that I was right, and I... and it kind of validating what... I was... what was happening and what I was going through, and finally be able to say, actually, the pain I am in, it’s actually a condition, and that it’s something and I’m not just saying, “Oh, I’m in pain,” or saying that: “oh, I’ve just got... I’ve got really bad period cramps.” ’cause it’s not, it’s not just really bad period cramps, it’s a condition. And also, being told that there is a very high chance that it could also be PCOS, but that they can’t 100 percent say until I’ve been tested for it, but that I can be treated for it, and that it’s... We’re working towards me getting better now.

Mm.

But yeah, it was... Well, I was in the back of the car and like I read... and I read the letter and I was expecting it to be: “We didn’t find anything,” like, and that’s it. And just reading it and saying... I took a... I took a photo of it and then sent it to my Dad, ’cause he was at work, but I just started smiling, and Mum looked at me in... in the mirror of the car, and she saw me smiling and said, “What is it?” and I told her that they’d got the results back from the MRI. And I think she was happier than I was that it was finally something that... something, and that I’d been told that I’d finally got a result. And ’cause I... yeah, I’d kind of got a... got a bad view of hospitals, and things like that, because of just being turned away, and like uneventful hospital trips, but there being so many of them, and so many of them being uneventful, and so many blood tests that had no result. And I have... I’ve had like three ultrasounds, and internals, and things like that, and just nothing coming out of it, and just, yeah, it’s just been…

I think the... the... when it started to get better, there was a lady who did my internal, she... she kinda said... we told her what... what had been happening, she said, just like: “Keep pushing and keep pushing back to...” like: “go back to the hospitals, try... keep going to try and get a result because you... and you’ve just got to keep... keep get... asking for it until you get... get the answer you want.”

So, was that... and was that helpful, that sounds like...?

Yeah.

So, there was something, you used the word ‘validating’.

Uh-huh, yeah, it was just... ’cause I knew it was something, but I didn’t know if it was... if I was be... like being dramatic, like they said like it was just a period and they were... ’cause I didn’t know if it was normal or not, ’cause like I was 10, I was... it was really young, and I only had off of... I only could base it off of what I’d been told about periods, and I thought it was normal, and kind of just realising that actually it’s not and that there is something wrong and that it is something that is gonna affect my life, and kind of actually finding out that it is what I thought it was, and that it is not normal and that I do need help for it. And yeah, it was just... it... it was very nice to know that it was... it was something, and that it was just... just wasn’t something that you can just brush off.

Yeah, and there’s so much in that. So, validating, but also hopeful?

Yeah.

So, they started when I was about 13 and I... it didn’t even register to me that it had happened, and my Mum went to the toilet and she was like: “Oh,” well, this has happened. And I... and I... I knew... I knew what it was and we’ve had conversations about it. It was all very well and good. On the second day that I had my period, I had to go swimming, so my Mum taught me how to use a tampon, and I eventually struck up the courage to put one in and it was stuck, really severely. I had to go to A&E. Gas and air and they had to pull it out. It was a... it was quite a traumatic experience, so... And then that’s when we found out that I had a perforated hymen, so that was the issue. And yeah, I had an operation to sort all of that out. But on the second day of having your first period, when that happens, it was, yeah, quite a scare. And I did... it was... so it wasn’t too bad when I started having periods, but I’d say may... when I was 14, and I’m not sure why, I have no idea, but they did start to become really painful.

I can remember just clutching my stomach, just on the floor, just like screaming and crying in agony. It was so bad. Just in bed all day on one Christmas because it was just awful. I had to use some of my grandpa’s back medication. It’s really strong. Yeah, just really awful, really heavy. And I had quite a bad spell of those.

Missing days of school as well, which I... I think is incredibly inconvenient and it’s something I’m sure a lot of girls and women will relate to, missing whole days of school just because of periods, which I feel is really unfair.

No. I mean, I’m gonna say that sounds like an incredibly difficult first period.

Yes, yeah, yes.

Can you remember how that kinda felt at the time?

Yeah, I thought there was something severely wrong with me, like the world was... I just... I had no idea what was going on. My Mum had no idea what was going on, she’s like: “This doesn’t usually happen.” And I... well, I still don’t like using tampons because it’s always in the back of my head now. Yeah, it was incredibly stressful and it was quite late at night as well and I found it quite embarrassing because it was my first period and I didn’t really know how to deal with it yet. So yeah, yeah, it was quite... I’d... I’d say it was quite traumatic for me.

Yeah, and it sounds... it sounds really traumatic. I’m really sorry.

Yeah, no, it’s OK.

And did you need to have any kinda follow-up after that, or was it... did they kind of... that it... that was... you... did you have to get back for any follow-up appointments?

Yes, I did. So, I went to A&E just to... for them to remove it and then, yeah, so I was booked a follow-up appointment to find out what exactly was going on.

Yeah.

And yeah, they found that I had a perforated hymen. So yeah, I had to have an operation to get that sorted out. And that was, I’d say, I think it’s two years ago now that that happened. Yeah.

OK. And was that before your next period or did you have some more periods while you were waiting for that to happen?

I had some more, yeah, but I didn’t use tampons—

Tampons.

—and they weren’t... they weren’t particularly painful at that point. I think it was after the operation, a bit after, that they started getting really painful.

So PMOS ( Polyendocrine Metabolic Ovarian Syndrome) used to be called PCOS (Polycystic Ovary Syndrome) lots of people will be familiar with the term PCOS. But the name recently changed to PMOS because it better describes sort of what's going on in the body.

And PMOS stands for polyendocrine metabolic ovarian syndrome. So PMOS is very, very common. And some of the symptoms that people with PMOS might experience could be things like irregular or infrequent periods, periods that are heavy when they do come. Skin changes like excess hair growth or acne. And it can sometimes affect how your body handles sugar.

It's a really common condition and it can affect different people in different ways. One thing just to be aware of is that, as a young person, doctors are very cautious about diagnosing it definitively when you are younger. So, for example, within eight years of your period starting. And that's because there can be so many changes to your periods anyway during that time.

But still, if you suspect that this might be relevant for you, please do see your GP.

And can you tell me a little bit... so about your kinda journey with PCOS (polycystic ovary syndrome) and how you came to know about that and how that impacts on you and your period pain?

So, I... well, I became obviously trans when I was 11 or 12. Well, I came out to family, and then I went... well, my Mum... like my Mum booked a doctor’s appointment just because like, she was like: “Well, how do I get seen by [gender clinic name]?” She was like: “I don’t really know who else to go...” obviously, doesn’t know who else to go to, went to the doctors, and stuff. He referred me to an endocrinologist, and... But at first... at first, he thought I... I was... I’d just be diabetic. Well, he... he did that, so... sorry, he sorted the referral to [gender clinic name]?”. Then the endocrinologist thought... just thought I might have been diabetic ’cause like I am like overweight, and... but I’m also like got some like extra... I’ve got like excess body hair, especially for like, at the time, like a 13... yeah, just 13- 14-year-old. So, he done like blood tests, and stuff. They came back: oh, I’m not diabetic. And then, he’d done like a scan just to see like if I’ve got like a fatty liver, or other things, like I can’t remember, it doesn’t matter. Well, it does, sorry. Yeah, just done... done a scan and that, well, yeah, he seen that I do have cysts on my ovaries. And then, yeah, so I found... like I said, I found out when I was like 13-ish. He did... after a bit, he did try to put me on metformin, but I didn’t know... ’cause I do... I do have like damage to my liver ’cause of like previous medication that I was on, but that’s like over time repaired itself, but at this point in time my liver was still quite damaged. Yeah, but one of the side effects could be liver damage, and I was like, I don’t... of like metformin and I was like but he never told me that. And done my... well, my partner did research on it and was like: no, you should... basically, they shouldn’t take this because, yeah, that’s one of the... Actually, no, it wouldn’t be 13 when I got put on medication, so I would have been 16. Big difference. But I was diagnosed with PCOS 13, 14.

And that was after some blood tests and a scan?

Yeah, yeah. And then it was like two years, yes, and then within two years later when I got put on metformin at 16. Yeah, so it was like, probably best just steer clear, so I did. And then another thing as well is that I can increase oestrogen by 25 percent. And like the... well, the reason why I got referred to the endocrinologist is to... well, they just monitor like my hormone levels for if [gender clinic] did put me on either like blockers, or even like testosterone. And so like... and like I say, he knew that I... like that I’m trans, so... it just didn’t feel right. But I know I... I didn’t... I didn’t end up taking the medication, but I took like a week until I was like: ‘no, I’m sure I probably shouldn’t.’ But... but I moved to [place name] when I was 16, so like mid-August 2021, I’d moved, and I’ve not had like anything looked at since then.