Not sure if its endo?

Hi everyone im Jade, im 19 years old and since about 15years of age ive had terrible periods that have lasted for about 2 to 3 week and had pain mostly in my right side pelvic/hip area. Its like a dull ache with sharp twinges mostly its is in my righy hip and leg but when really bad is also on my left side aswell, I also get twinges and cramping pains in my tummy under my belly button, these pains dont last for long and sometimes they are painful but other times they are hardly anything. I take paracetamol and ibuprofen but it doesn't get rid of any of the pains especially period pains as they are the worst, sometimes I cant stand up or move about they are that bad. I was told at 16 that I had pcos and was put on dianette, these pills didnt help with any of the symptoms, at about 18 i was put on yasmin and whilst it helped regulate my periods I was still getting a lot of period pain and leg pains, they sent me for a scan on my ovaries which came back clearso I dont actually have pcos. I also started getting pain when I have sex, a deep pain inside and also bleeding after sex so they said it was because of my pill they changed me onto mercillon. Ivr benn on it for about 6monts now and my periods have dramatically changed I bleed for one day but its really heavy and I get a lot of pain, and ob the second day I get a lot of dark brown/black stringy blood clots also with pain. Im at a loss and dont know what to do as the doctors are blaming my symptoms on the pill im taking I dont want to come off it as I know my periods will be worse than they are now. My partner says I also have really bad mood swings especially the week before and during that im on my period. Can anyone please help me. I also hacw symptoms of ibs but I never associated with periods as my dad suffers from it. I have recently started feeling sick while eating and getting pain in my lower back.

Thanks Jade xxx

15 Replies

  • Hi Jade,

    I am so sorry you are having so much pain and discomfort.

    Your symptoms certainly sound typicall to endo however I am sure I am stating the obvious by saying that none of us on here can provide medical advise and it so so important you get yourself checked over by a doctor.

    Have you ever been referred to gyna specialist? Please make an app with your GP asap and get a referral, you should not have to live with all this pain it's just not right!!! maybe you can list all your symptoms down and discuss the possibilities with your GP? If you find your GP unhelpful demand to see another one.

    It took me 10 years to get diagnosed, I just wish I knew then what I do now, this forum is great for information.

    Do not take no for an answer and push for a laparoscopy, it's the only way to know for sure.

    Good luck

  • No I havent been referred to a gyno yet I have explained all my symptoms to the doc and they keep saying its down to the pill that iim on. I sick of it all now I have an appointment with my doctor on tuesday im going to ask about a laparoscopy when I go thank you. I know that i cant take any of this as medical advice, iwas just wondering if the symptoms were the same after doing some research of my own, thank you x

  • Hi

    Lilykat is right. You must insist on being checked out properly as it does sound like Endo. Do not pass it off yourself thinking you are just unlucky with your periods - which is what I did for years. I only had a few endo symptoms (and it wasn't talked about much when I was 19/20), so I just thought I was one of the unlucky hideous period sufferers.

    I was put on the pill to help me too, but after years and years (I am now 41) I have only now found out I had it because I couldn't get pregnant (I married late!) so 2 years ago I started pushing to be sent for tests etc etc, and eventually had 2 laparoscopies - which found cysts and riddled with endo and its stuck my organs together and my left ovary and tube are so messed up. My fertility is non-existent. So you are young, you can prevent this happening to your body. Do not let them fob you off saying you are too young etc etc - Endo starts forming when you ARE young!

    Good luck and be strong - and insist with your GP you want an experienced/good gyne.


  • Very much the same, I was also told I had IBS at one point, however when I eventually had my first op they found extensive endo on my bowels so it certainly sounds as if you are suffering the same thing along with all your other symptoms, it really is a horrible condition.

    I would advise you to demand a referral from your GP, they can't leave you suffering like this!!! The more info you go in with the better and please do NOT take no for an answer.

    Keep us updated

  • Thank you so much for all your replies. LilyKat197 ive never mentioned symptoms of ibs to my doctor as I assumed it was nothing to do with my periods and because my dad suffers from it so I assumed it was hereditary, I will do thanks. Sporen1 im so sorry to hear they left you that long without a diagnosis and have left you in such a situation, thank you both fot your kind words and support. Ill keep you updated as im at the docs on tuesday xx

  • Stay on the pill - you would have to anyway with endo, so that's fine you can do as your GP asks - but also you do need referring to a gynaecologist - preferably and endo specialist gynaecologist though the 1st appointment is usually with a bog standard junior gynae and they are rarely experts on endo - but it is a starting point.

    You should be scanned with ultrasound to rule out fibroids, to check for deformities, to check that the ovaries and tubes are the average size and shape and in the right place. If they are stuckat the wrong angle can also be a sign of endo. If you have a tilted or retroverted uterus it is againsomething a lot more common in ladies with endo. So while endo itself is not visible in scans other things are -which can be more easily treated, or can affect the surgery and treatments for endo if that is eventually diagnosed in a keyhole laparoscopy op.

    If I was betting - you have all the classic signs of endo there screaming out loudly - so do not give up pestering your GP to refer you to a gynae.

    You might want to conside the mirena coil as it offers a longer term solution to stopping periods for up to 5 years without needing to take tablets every day - and the best time to have a mirena installed is while you areout cold with a general anaesthetic - which is something to seriously consider having done at the same time as the lap op.

    The opportunities for pain free installing are very few and far between - so grab the opportunity to give that a go.

    You can always get it easily removed should you want to start a family or if you feel that it doesn't suit you side effect wise. I don't have any side effects fromit other than it totally stopped my periods - but some ladies do experience some side effects, but not nearly so many as swear by it being the best period stopper around.

    It does take 4-5 months to settle and get to work but when it does - wow, no pills, no pmt , no periods no period pains, saves a fortune in tampons and towels and best of all gives you back your life.

    If at the present time you are suffering from your periods 2-3 weeks of every month in the year, then stopping your periods would give you back up to 9 months of the year period problem free - that's a vast amount of time to regain- time you can be getting on doing what ever you want to be doing in life. It really can be life changing while at the same time reducing the chances of new endo spreading.

    The surgery to diagnose - if they do find a small amount of existing endo - it can usually be removed there and then.

    If the endo is complex in hard to reach places then you may need a surgery from a more expert endo surgeon to follow up the 1st op, and either way - the aim of the game after that is to reduce or stop periods to stave off new endo spreading and growing.

    Another tip - is if you do get and endo surgery date - it is much better to be on a period or recently had one, makes the endo active and much easier to spot and therefore be removed. So painful as it will be, it is better to come off the pill before an op so the endo is back in action again. Then once the op is over you can go back on them or if you have a mirena - wait a few months till it kicks in to stop them completely (hopefully not taking too long to do the job.)

    At this stage - definitely push your GP to refer you to a gynaecologist and keep on at them. If they keep refusing switch to a different GP - or even consider switching to a completely different surgery. It's the only way to get someone to listen to you and I really do thing you do need to get these symptoms investigated.It sure does sound like endo.

  • I have had an ultrasound on my ovaries which showed nothong wrong with there placement or any abnormalities on them, I am going to ask about having endo when I go to the doctors on tuesday as im sick of being told its just the pill im taking, they seem to ignore the pain I mention in my legs and hips, its beyond ridiculous now, ive had bad periods since I started them when I was 14 at first I was told they were irregular because I had just started but 5 years later theyre still the same. Thanks for your replies iy seems when I mention to people in person they seem to not believe me or just say ot a part of growing up and that the doctor is always right. They dont seem to understand what it feels like. Thanks for your replies x

  • Hi jade,

    It does seem as though you have all the classic symptoms so it probably is. Unfortunately, even when diagnosed, there isn't much hope of a pain free life. I was diagnosed at 16 and even now (I'm 18) I haven't had any luck. From around the age of 10/11 it started and I didn't think it was Endo until I saw it on tv. I have got in touch with an Endo specialist who is having me try zoladex for 3 months which I'm still dubious about. Then I'm having my second lap which will hopefully reduce pain and help my fertility. It seems like you know what Endo is but if I were you, I'd research no end as it helps you know what's going on. I did that and now I can talk to the professionals and know what they're telling me. Also it helps when they're b*llsh*tting about there being a cure or that certain meds or treatments help. Some of them can be worse for you.

    I hope you dont have it but if you do then best of luck. If you'd like Simone to talk to then I'm here for anyone. It can also help that I'm a similar age. Good luck.

    Leya xxx

  • Hi Leya,

    Thank you so much, it seems like when I try to tell 'normal' people they just think its in my head or as they say 'it cant be that bad' its so nice to actually speak o people who can understand. I Found out about endo after researching my symptoms on the Internet about 2 week ago after I suffered a 'worse that usual period' evertime I sat down I got a sharp pain shooting upwards seeming from my uterus area, and I couldnt walkabout as I kept feeling dizzy and is if my legs were going to fall off.

    Im going to keep on researching as best I can. May I ask what does Zoladex do? Are laps painful?

    Thank you for your reply, best of luck for you for the future I hoe something works for you.

    Jade xxx

  • Zoladex is used for prostate cancer, and many female cancers (breast, ovarian, cervical e.t.c) its used for IVF and also treatment for Endo. What it does is it stops the pituitary gland from doing its job. It mean the hormones you naturally produce get stopped, putting you in the temporary menopause. I'm still a bit dubious about it but will let you know how it goes on thursday.

    Lap's aren't painful as such, it depends really on what you have done. Like my first lap was just diagnostic which means there wasn't a lot of surgery involved, just movement. I still came out with more pain than I thought and I couldn't walk for about 4-5 days. I was given gas for the general anaesthetic which I react really badly to, for example I slept from surgery time at 8am until 6pm. I only woke once and cried my eyes out because I found my underwear removed when I wasn't told about anything being messed with down there. This time around I'm having a lap and dye test and also removal if he can so I expect recovery to be a bit longer this time round. But I'll be sure to take plenty of flat coca cola with me for the gas in my shoulders, works wonders.

    If you have any more questions, dont hesitate to ask. Pm me anytime, I'm literally always on here (been busy the last few days but now I'm free) Good luck and hope you get a diagnosis, hopefully not endo but if you do then this is the best place to come as everyone is so supportive :)

    Leya xxx

  • Hey Leya,

    Temporary menopause? Ooh id be a bit scared haha, keep me updated! I didnt know the gas would travel upwards, Iisit really bad? Do they usually just do a diagnostic lap first? Id be terrified, ive never had surgery before. Thank you so much, everyone on here is so nice. Im glad I found this site! I'll keep you posted about whats going on when I get my gyne appointment xx

  • I know, I'm not looking forward to it :( As for the gas, I found the gas pains in my shoulders quite bad but I just drank the flat coca cola and after a day or two it got better. A lap is used to diagnose Endo and it is the only way it can be diagnosed and treated. Don't worry about surgery, its honestly fine, you'll ache for a bit afterwards but its not massive surgery.

    Pm me if you wanna chat more and I'll update tomorrow on how the injection went.

    Leya xx

  • Good luck! Xx

  • The gas they use to pump up your tummy like a balloon to have a good look round is just carbon dioxide .

    Yes the same stuff in fizzy drinks. and when you open a bottle of fizzy - whoosh the gas rises out the top.

    So any of it trapped around your organs in your tummy that hasn't be released through the laparoscopy holes before they seat them up with surgical super glue (yes they really do super glue your holes up!) that gas will rise to the front of your tummy as you are lying down on your back, but when you sit up rises and gets trapped right under the diaphragm at the bottom of your ribs.

    All your lower tummy organs are contained in a large sac called the peritoneum which is why it can be blown up like a balloon. and why endo tends on the whole to stay within that sac. It is very very rare that any endo is found outside of it.

    The painful part is that pains in the diaphragm are actually felt in your shoulder - usually the right side but a bit of both and boy can that ache and the ache radiates to your upper arms too.

    On the good news front being carbon dioxide it will work its way out to your digestive system and from there you can and MUST burp and fart it out as quickly as you can. The sooner you expel it the better you will feel.

    Don't be shy in hospital - all the surgery patients on the ward will be doing the same thing. it won't smell because it hasn't come from digesting foods, but it sure needs to be parped out at every available opportunity.

    A really good tip to get it shifted. is for you to be shifting about - get up and walking round your bed or along the ward as quickly as you can safely do that. The first 2-3 hours after the surgery you really will be drowsy so sleep and snooze, but when you do wake up properly then get moving as often as you can. you don't have to go too far, but regular pottering about will get your digestion and that gas moving and also protect you from the threat of a DVT.

    Peppermints and peppermint tea is also a good way to be rid of it.

    There are peppermint tablets called Windeze which do help too. If you hold on to the gas because you are shy about farting in a hospital ward- you will be in alot of unnecessary pain for a lot longer than you need to be.

    I am quite sure you know what having trapped gas feels like if you hold on to it by being too polite to parp when you need to, well that's only a fraction of the gas that these ops can trap in you. It really is strange but the trapped gas pain is far worse than the actual operation pain will be.

    and it should be possible to eliminate all of it in 2- 3 days of effort to get to rid of it and you will feel a whole heap better. to be honest it is one of the benefits of being sent home the same day as the op, because at home you can jiggle about and get that gas out without fear of embarrassing yourself in public.

    at this point in time you are too young for the menopause drugs and you need the diagnosis surgery first so refuse them if you are offered them. you do not need them and they will only hide any endo when you do have surgery, which is not what you want. 1st surgery to locate and remove endo is best done when endo is active and easy to spot.

    Leya is very young to be on the drugs and she has already had a host of other things done - and this is a drug she has researched before deciding to take it.

    In your case it is far too soon for that, it is an option later on if needs be - but certainly not before getting a diagnosis, and if it is offered to your before a diagnosis - turn it down.

  • Do you think that maybe I'm to young anyway? Take out the fact that I've had a lot of treatment already and just the fact that I'm 18 and having zoladex, do you think that's healthy for me?? I've been offered it since my diagnosis at 16 and just haven't felt ready and even now I dont but my specialist said he needs me to go on zoladex before he can operates a remove any Endo. Won't this supress it? And do I really need zoladex before hr can operate? I know this is a bit late now seeing as I'm having the injection tomorrow at 8.30am but I'm still unsure about all the side effects, most of all whether I'll have full fertility back afterwards or not. Sorry to burden you with this and sorry jade for posting this on your post.

    Leya xx

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