Living with endometriosis as a student? and depression?

I am 18 eyars old and have been suffering with symptoms for almost 2 years. When I am on my period/ just coming up to my period, I am in constant pain, have really heavy bleeding, clots, pelvic pain, back pain, severe abdominal pain, sickness, dizziness and I find it incredibly hard to do day-to-day things, even walking or going to the toilet (I have bowel pain esp during periods)... I also have bleeding & spotting, and lots of pain inbetween periods, and during sex (which is taking a toll on my relationship. It's too painful to even have sex at all at the moment. Luckily my boyfriend is very understanding, but I want to be able to show him that affection).

As a result, I miss school regularly, 1-3 times a week at least, at the moment, or sometimes I miss mornings, or have to go home early because of the pain. I also find it hard to even walk to school in the first place, and I have nobody to help give me lifts.

I was on the pill Microgynon, which still gives you a monthly bleed. I had been on it for 3 years before the pain and irregular and heavy bleeding started, and had not had any problems until the last couple of years. I have been prescribed a new pill (Cerazette), which supposedly stops bleeding,

and lots of strong anti-inflamatories, painkillers etc. I have been in hospital dozens of times, but all they do is give me more painkillers, but they make me feel really sick, drowsy and dizzy. I hate the side-affects the prescribed painkillers give me, and they make me feel so sick that I can't even stand up without the room spinning. The pill seems to have made things worse. I have been taking it for almost four weeks, and every-week for up to 4 days, I bleed heavily. Which is more than I used to and making things worse. I hate it when I wake up in the middle of the night and I've bled everywhere. It's so embarrassing and scary.

I have an appointment in July (laparoscopy), but it seems like so far away and I don't know how I will cope in my exams after missing school. Also, on top of endometriosis I have abnormalities on my cervix, which could lead to cervical cancer if left un-treated. I am worried and nobody has explained this to me properly. I am having cryosurgery to remove it. I am also anemic, and the loss of so much blood and iron makes me feel weak and faint.

I am also really concerned for the future, if this carries on, how will I get a job or be able to get the qualifications I need if I can't even attend school regularly? Also, what about fertility? I want to have kids in the future, and nobody has given me any information.

My teachers aren't understanding at all, and despite talking to my parents about the severity of my problem, and doctors notes/hospital notes, they still make me feel crap and like it's my fault I'm missing school, but I really can't help it! There is nobody that I know who is going through the same thing as me, at my age.

I am really concerned for my A levels, but luckily I am taking more a levels next year to make up for it, because I feel like i'm gonna fail.

Is anyone else going through a similar problem?

This is making me really depressed and I feel helpless and hopeless all the time.

I feel like nobody is supporting me or helping me to get through this. What can I do?

12 Replies

oldestnewest
  • Also my peers and teachers aren't very nice to me, and think i'm 'skiving' because they don't know or understand my problem. It's not fair, and I am losing out on my social life because of it.

  • hiya - i dont really know what to say, except by coming on here you can see there are many other women feeling just like you, and whilst this isn't any help to your situation, it just lets you know you are not skiving and that these problems are real.

    have you printed off any of the leaflets from the main endometriosisuk site, there is lots of leaflets that you can download and print (or request it by post if you prefer) there is a particular one called endometriosis in the work place, and although you are at college/school, it amounts to the same thing, you just need some understanding you can hand them in and maybe educate some of the staff to a real disease/condition, whichever you want to call it - i am now 40 and i have suffered all my life with these problems, i just thought i was unlucky, its only been in the last few years that i've come to realise that its so much more than just 'heavy, painful periods' and how so many people, women included, just think i'm being a wimp, or have a low pain threshold - i would love to invite them to spend just one day in my shoes, as there is never one day without pain, or worrying about where i'll be when i'm bleeding, which is why i spend so much time at home, with my friends saying i'm a miserable cow as i don't want to go out getting drunk on a girls night out.

    but anyway, have a look at those leaflets xxxx

  • Thanks so much for your comment. I have shown my teachers several articles and things on adolescents with endo, who have bad attendance as a result etc. I don't think they bother reading them to be quite honest. One of them said to me that she does understand I have valid reasons, yet I still get a lot of pressure from her and she always looks at me like she's disappointed. I have pain everyday too. I didn't think that was normal. It's good to know there's other people like me. Only a couple of my friends are understanding and have been there for me. The others just don't seem to care or think that I'm being OTT (which is not the case ofc). Anyway thanks :) I will have a look at the leaflets x

  • its so difficult, and even more so for you being so young too, it makes me so mad, there needs to be more awareness for this, and a few other 'invisible' conditions, just because we look fine on the outside, the dont realise that we are hiding so much pain - just got to focus on your lap in july, it seems a long way off but it will soon come around, we're half way through may now, so its really not long hun, chin up xxx

  • Thanks, I just feel really alone right now. I'm so happy I found this wesbite! I didn't even know it existed. I'm just fed up of getting punished for something that I can't control. I know I just want a solution or at least something to help with the pain that doesn't make me feel sick. Is a laparoscopy painful? I know it's quite invasive... Thanks for the support xxx

  • Hello, I've been in your shoes growing up, people telling me it normal so I believed them until four years ago I bleed none stop for over 6 months and at the end of it taken in to hospital, still then people thought it was in my head and I work in a school as a teacher, so I'm the other way round and I had the same response! Do you have a sixth form pastoral team? Or a head of year you could talk to? My advice would be find some support just a couple of members of staff that understand and ask them to tell the rest and back you up, they can and should do that, give them the leaflets to pass around to them.

    For the rest ignore them, other wise you become paranoid and the stress will make you worse!

    Is there any way you can go back on the first pill, the mirco pill? Or you could try the depo injection it shuts down everything, not any side effects?!

    My doc has put me on Lyrica Pregabalin for chronic pain relief, it takes the edge off and the only pain killer that has!

    I'm having my second lap in a month and I'm not going to lye it hurts! You get gas pain in the tum and then the shoulder, that hurts, take peppermint tea to help! The rest depends what they do but you can't move around for a couple of days but try.

    I'm 27 and it has had an massive impact on my life but don't let it rule your life,

    Good luck and I hope I've helped

    :) x

  • My head of year is very dismissive, and has even shared some of my personal information with some of my peers. She was understanding at first but has grown impatient with my absences. I don't really trust to tell her anymore about my situation. One of my teachers is supportive and doesn't ask many questions, and has even given up his time to offer me extra lessons. I will talk to my head again, but she always has a go at me, and looks at me with disappointment. She just thinks that I'm depressed and that i'm skiving because i've had a rough year. I will ask my gp about changing my pill, but because I have only been on it for a short while, he told me to just stick it out for the 3 month course. I will also ask him about other methods of pain relief, I just thought there was only pills, and this website has helped me find out that there are other methods. Thanks for your message, the advice about laps, that's very helpful x

  • Hi I went thru the exact same things you have. I ended up doing school part time eventually cos of it.

    I have had Endo since I was 11 but took 11 years to get diagnosed.

    The surgery should really help you hopefully. Also if your looking for support why not try Endometriosis UK website where theres info packs, information and even telephone helpline if you need it.

    Talking to people who know exactly how you feel will really help. I felt so isolated when I was younger. But things are much better now and I really hope things get easier for you to.

    Would you like my Facebook add???

    Gillian

  • I am a student also though at university and I am 20. I also struggle to keep up with my work and I understand how hard it is with exams looming, there are many days when I just am in too much pain and don't have the energy to revise. I have been on cerazette now for 3 months after trying various combined pills and provera all of which confined me permanantly to bed. I am lucky in that the cerazette has stopped my bleeding and therefore my terrible period pains, but not my general cramps, exhaustion, bowel or kidney problems. I feel low a lot of the time too especially when thinking about the future, and feel very isolated living alone and unable to socialise. My university however does not know I am ill, even though I have been into hospital just over a year ago. I really hope that you can find a solution, and that the lap in July goes well and eases the symptoms so that you find things easier next year. I unfortunately do not really have any answers, but i wanted you to know you are not alone. There only thing that has been suggested to me is counselling, does your school have a counsellor, maybe you could arrange to see them, get them on your side, maybe they could help you speak to your teachers again but ensuring that you are listened to fairly; if nothing else they will be a supportive and non judgemental ear to listen to you about how it is all making you feel.

  • Hello again,

    Forget about your head of year, I know teachers like that and she won't listen, do you have any nice deputy heads? Or even the headmaster? If your head of year won't help you then go above her! Take info in about endo when you speak to them so they understand more. And yeah see if your school hasa councillor.

    Hope you can find some one in your school that can help and support you soon!

    :)

  • I have already started counseling with a service out of school, for some other things, but haven't yet really talked about my medical problems, but hopefully will discuss the subject in more detail soon enough. I'm finding it really hard to get my school on my side, and I know what our head teacher is like and to be honest, he doesn't really care about anyone from the sounds of it! I will keep trying though, and bring in more leaflets and stuff. Thanks for all your advice :) xx

  • Hi, i am in a very similar situation as you, i have just turned 19 but im in university. Pain used to cause me to miss alot of my days at sixth form too. I was also put on Cerazette after having been on yasmin for 2 years. I however have only had 2 periods this year but this could be to do with the growth on my ovary.

    I'm going into hospital on Tuesday for a laproscopy and potentially a 'major operation' I have a growth on my left ovary and on my right hand side i have a mass on my bowel, colon, urethan and fallopian tube. I'm also scared about my fertility because of this. The doctors and hospital don't know what nature of the mass is and after various tests, (MRI, CT, bloods) they still don't know.

    And also like you, i have been told it could be cancerous so i have been given my own cancer nurse for support just incase that is the case!

    My advice is just to keep on pushing the hospital and doctors, they can deal with you a lot quicker than they do! And as for school, although they may be making you feel rubbish, forget about them! Your the important one not them and if they are not considerate then its a flaw in their personality!

    Hope you get better soon and find some kind of relief from this all xx

You may also like...