Hello, this post is longer than I intended but I wanted to give some context - my actual question is the last paragraph so feel free to skip to the end🙈A quick summary of my symptoms- progressively getting worse since starting periods at 10, having to stay home from school by 12 or 13 due to immense pain waking me, vomitting from pain, painkillers useless etc.
When I was first prescribed the combined pill at 16 I thought it was a great help until I went back to the doctor and said it only lessened my pain and I was still in a lot of pain every 28 days, he insisted "well you can't have period pain without a period" and told me to take them back to back with no breaks.
As if my body wanted to prove him wrong, I began getting pains regularly (most days although mild) at which point they just started swapping my pills every time I went back. Shortly after this, I began feeling a swelling/hardness on the right side of my abdomen beside my hip which would come and go. I saw the doctor about this and he waved it off as he couldn't feel it, even though I told him it would come and go. Another doctor gave me IBS medication for it which didn't help. The only time I seemed to get some relief with this was on the mini pill, which I no longer want to take as a couple of years back I ended up bleeding 3 out of the 4 weeks in a month!
Having spent so many years on various pills, my hormones and periods are kind of messed up to the point where I can't even predict them anymore - my last one I felt hardly any pain while a couple of months ago I physically couldn't stand out of bed and nearly reached the point of ringing an ambulance from how much pain I was in...
The past couple of years now, the pain by my right hip has felt almost like a tugging, stretching sensation. It has been constant every day this week, sometimes I will stand slightly the wrong way or lean or sit the wrong way or even when I'm driving and extend my leg to the pedal I'm experiencing a jolt in this area.
At my last appointment I tried asking the doctor about links between this pain and my periods/symptoms/hormones as this only developed after taking the combined pill and the mini pill seems to offer some relief. Apparently I was talking gibberish cause he kept telling me he didn't see the connection or didn't understand what I was trying to get at. When I suggested maybe something could potentially be stuck, he said I couldn't have adhesions because I've never had surgery and I couldn't have endometriosis because I don't have "any" symptoms of endometriosis.... He suggested "stuck ligaments" for which I should "make sure to exercise" (I work on my feet 12hr shifts 4x a week) and he kept telling me as well period pain is normal and everyone experiences period pain differently etc, although he rang me after the appointment to say he had changed his mind and is referring me to gynae... I guess I just wanted to ask has anyone experienced something remotely similar to this because I feel like I'm going crazy when even the doctor is telling me he doesn't see the connection and apologies again for the super long post ❤️
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Clio135
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Oh wow, that’s an absolutely shockingly awful and ignorant response from your GP. I thought they were more educated in this day and age!!
It sounds like he has never fully listened to you and is too arrogant to consider the possibility that the patient might be right.
What I’m hoping is that he mentioned all this to a better-informed colleague (maybe female, but not necessarily…) and the colleague tore him a new one and told him in no uncertain terms that he needed to educate himself quick sharp. Then he decided to do a little reading, realised how wrong he was, and referred you as he should have done.
That is my fantasy, because I truly want him to feel bad. And maybe admit that he got it wrong or maybe even apologise to you. (I know, I’m dreaming!)
Put simply - it’s not you, it’s the ignorance surrounding endometriosis and unfortunately it’s very common. I hope your gynae appointment comes through swiftly. Keep a diary of symptoms, however weird & whatever time of your cycle, and talk it through with the gynaecologist.
In the meantime, take care of yourself, keep pushing for adequate pain relief and use this forum for real experiences, insider info and support. It really can help you keep going when you’re low and doubting yourself xxx
Thank you for your kind words and advice and yes I agree we have much higher hopes for what went through his head than what likely happened 😅 in his defence I had actually chosen that gp when I booked my appointment online as the last time I met him he said that my hormone tests came back fine and if my TV ultrasound came back fine the next step would be referall so I thought he was one of the good ones. Maybe he just likes to send mixed messages, to keep it interesting
I’m so sorry you’ve had this experience. It sounds very familiar to the 15 years I was fobbed off and lied to. Only taken seriously and diagnosed with very severe Endo when I couldn’t conceive by which time it was too late. The disease had obliterated by insides and caused irreversible damage resulting in lifelong pain and infertility.
I hate those doctors for not listening to me or taking action sooner, my life may have turned out very differently.
To me the symptoms you’re getting definitely sound like there’s a high chance of Endo.
You know your body better than anyone and the very least the doctor should have done is booked an MRI whilst waiting for your gynae appointment.
It’s sad we have to but If you can afford £200 for a private consultation with a BSGE specialist it is well worth it. It puts you straight in with an Endo specialist and you get a full hour with them to talk properly and they can do any further tests or treatments on their NHS clinic. Or you may have private healthcare insurance through work which is another route too.
Sadly many doctors still, even with a diagnosis continue to gaslight and minimise my pain and disease.
It makes me so angry that nothing has changed in all the years since I was diagnosed. The level of pain ’re left to suffer in is excruciating and with no one taking us seriously it’s inhumane.
Best wishes to you, please feel free to message me anytime. ❤️
Thank you for this ❤️ tbh this is one of my fears too as one of my cousins has fertility issues and spent years trying for a baby. Apparently for her it's fibroids or cysts or something similar but I'm aware of a lot of conditions actually being symptoms of endo and it can run in families too, our other cousin last I heard was also waiting to see gynae so I don't feel any of us are being taken as seriously as we should... With regards to bsge, I'm in NI and we actually don't have a centre🙃 so sadly that £200 would turn into £200 + flights +accommodation and so on, just another way they are forgetting about girls who are suffering lol
Sounds very much like the pains I get from my adhesions! No endo diagnosis here, not found on a lap but has been suggested they could potentially find endo beneath the adhesions with further surgery. No endo found on ultrasounds. One gynae said my adhesions must be caused by my c-section, another said there's no way that's possible and there may be endo beneath them, another said I must have had PID but I've never had symptoms. My adhesions are very severe, deep and wide-spread (ovaries, fallopian tubes, uterus, bladder, bowels, liver) and I still have no answers! 🙃
Sorry to hear that! I hope you get answers soon, that sounds really painful❤️ I also had an ultrasound about 4 years ago and a TV ultrasound a couple of months ago and they've basically said because they can't see anything there's nothing there and it's almost like they're telling you it's in your head at that point
Absolutely. They did warn me though that an ultrasound can only pick up moderate to severe endo, and not mild. But that mild endo has no bearing on pain. They said they've had people in with few symptoms but found severe endo, and people with bad symptoms and mild endo!
So sorry to hear this. I also have very painful periods, uterine pain and lower back and muscle pain a week before and during the period. I also have a pain exactly as you describe, inside my right hip. I have no answers though. I am now wondering about endo, but my troubles started after I had children and I've been suffering for the last ten years. Does anyone know if it is possible to get endo starting in late 30s? (before that I was fine). I've also been diagnosed with PMDD. But for me, the low mood is triggered by the physical pain. I'm so pleased you've been referred to a gynae - I hope you get the investigations you deserve. I had to go private in the end as the NHS gyae wait is 8-12 months just to see someone. I can recommend The Newson Women's health clinic (even if you're pre-menopausal).
Sorry to hear your experiences, it's nice not to be alone at least 😅 as far as I know it should be possible to develop endo at any point or it could also be possible that triggers have made it worse? One of the main things about endo is that it's different for everybody and some women may have it and not notice any symptoms for a long time and unfortunately a lack of research and training for medical staff when it comes to women's problems makes it that bit harder to find the right answers 😕Reading posts and replies in this group helps me to remember that I know my body better than anyone else so if you think your doctors haven't got it right you should definitely keep pushing for answers and help ❤️
So frustrating to read your post, GPs seem to know nothing about endo or women's bodies but like to pretend they know for some reason. I have the hip pain you describe, I promise your not imagining it. Its great to hear the GP has referred you despite all the dismissal. Keep pushing for answers you deserve to not be in pain, it is not normal for it to be like this xxx
Ugh this is disgusting 🫣 I would complain as he needs to know how this made you feel as he's going to do this to another person. This happened to me throughout my teens with multiple different doctors. Unfortunately they know nothing about women's health as get minimal training
there’s a HUGE ignorance and lack of knowledge when it comes to endometriosis.
Last time in the hospital I only heard “but you know the endometriosis is hard to treat?” or “but did you try iud?” (lol i had it for three years with constant absominal pain during and outside of my period cuz it has slipped into cervix and truggered pain to the level i fainted at the house).
I am frustrated how much ignorance I experience and that I am not referred to endo specialist but just regular gyno, this is ridiculous and really upsetting.
I have a feeling they don’t do anything, don’t suggest any treatmrnt just painkillers and I think waiting until its so bad and endo is so spreaded ariy d rhe body that only lap canbe done. Otherwise no bloody help anywhere(!)
Thanks to that I come from Poland, I can’t afford private endo specialists here therefore in October I am going back for few days to a specialist private clinic where gyno focus directly on the endometriosis.
To anyone here - whether Poland, or Germany - I heard there is a worlwide known great clinic treating endo too. Maybe try abroad…
I am really shocked that nobody yet in uk has even suggested dienogest, nobody suggested me an mri (& I live in London guys) - all that i oy know from my private appointments in Poland or own research. I am seeing zero job done here for people struggling with endo 🙄
You're exactly right but even then, when I went to the GP they've only given me the pill and each time I say it doesn't work or gives me new/different problems they just change the pill. It's only now after 6 years of seeing doctors for this have they even offered me painkillers, prescription strength cocodamol, and when I told them look this isn't helping because I can't go to work or drive in that state so I'm not any better off, they gave me naproxen instead. I've had two ultrasounds as they don't seem to want to do any other tests and both times it was more or less said that because they didn't find anything on ultrasound there's no physical problem which we all know is not necessarily true 🙄 at least you seem to be lucky that back home there are better provisions for these kinds of things, good luck getting sorted there ❤️
this is ignorance from doctors again since the gyno as well as the radiologist examining the US/MRI should be experienced particularly in endometriosis but here in uk they send us to general gyno, they don’t care like you are saying, its a joke here, unless you are dying from the pain or your endometriomas had broken - then you will get laparoscopy which is being done again most probably by the general surgeon or by the regular gynecologist - and what I was reading recently it is the first (!) surgery lap that is most important in prediction of the future re-lapses of endo, once the first is done incorrectly then you are coming back all over again and again (& because most of the time the person using lap is not a specialist in endo and has no idea where to look for other places where this has spreaded). I started having bowel issues ahen on the period - spoke in the hospital, spoke to GP - nobody cares, i heard „oh you might have bacteria because of diarrhea you have” (yeah right diarrhea which is over once my period has ended!) I might this, i might that… its like running blindly across the field. Yes I’m lucky going to Poland, I would advise everyone to go abroad to seek help.
Today I saw a consultant for the first time and I was told I have endo most likely as my ovaries are stuck down. I've been having strange leg symptoms from then feeling in pain , weak , heavy and terrible restless leg that's all got worse the last few weeks. My gp thought it wasn't related but consultant said that the endo could be pressing on nerves. Keep fighting for diagnosis and don't be afraid to ask to speak to another GP. You know your body best. Sorry your going through this too
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