I would really love some advice from someone who knows about endometriosis.
I think I have endometriosis as I have had symptoms on the NHS website which seem to add up to this. After an appointment, my doctor did not seem to understand my pain and he just told me to go on birth control pills (previously my prescribed painkillers didn't help at all). So several months ago my flatmates called an ambulance because I was in extreme pain and crying and screaming whilst on my period. It felt like my insides were being put inside a blender and even the movements of the car journey hurt so much with feelings of cutting and stabbing which made me worn out and feel sick. This pain was not like a normal 'bad period cramp' which I have years of experience with so the doctors originally thought it could be appendicitis but it wasnt. A blood test they did showed up that there was inflammation in my body but the test did not show where and this was ignored.
This horrible pain continued over the hours I was in hospital until the early hours of the next morning when it was a lot less bad and I could actually walk. But still my insides hurt so much that even sitting on the toilet sent ripping pains through my body and pelvic area and I did not want to move or roll over as this sent pains through me too. I was given some extra strong painkillers and taken home where it took a day or two for the pain to go and be normal again.
Ever since this incident I have had many more painful experiences always during the first days of my periods, lasting 2 days being very strong pain and one day of moderate pain. Walking hurts me so much and my body feels exhausted. Some months are less bad and out of the 7 times I've had this, the first and 4th time were the worst.
I would love some help as to what this could be as I am having an extremely hard time with my doctor who insists I just need to take painkillers. My family and friends are worried about me as they saw me in this dehabilitating pain.
Thankyou so much in advance for reading my post and sharing your knowledge and helping so many people.
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BlueButterfly123
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Write a list of every single detail that you have experienced..even if not around the time of your period and then say I think I have Endometriosis and would like to request a specialist referral. Some of the below links might help and even taking someone else from your family who was help you at the appointment.
It took me years to get diagnosed, but I knew there was something not right 🙁
Thank you so much for taking the time to read and reply. So I spoke to my doctor today again about this and he has reffered me to a specialist but he said they may not accept this refferal. Hopefully this will get things going. Thanks for the links you sent they are really helpful! I feel the same way, like something isnt right, but sometimes it feels like people dont take it seriously and I end up feeling like a wimp!
They say it can take up to 7 years to get a proper diagnosis!!
I wonder if you’ll receive a copy of the referral letter to see what he wrote in it?
If it gets rejected, I would find out how you can make a complaint, would like a second opinion and request a copy of the referral letter..sometimes you just have to stick up for yourself as it’s not them dealing with it!!
Yes I hope I get one and that's a good idea, thankyou for helping so much its sometimes difficult to get doctors to understand and get things sorted properly!
I have confirmed endometriosis, but before my process started and before i went to gynaecology my gp recommended that I go on the pill because majority of the time it’s one of the first things the gynae would suggest. Shortly after I began my pill, I had what I later found out to be a cyst burst and that was the reason why I was in such agony.
The reason your gp put you on the pill is probably because if there is endo there the pill is going to help to control it. Even after having my surgery I still take the pill because I know it’s helping to control my endo and my pain isn’t as bad as before. But everyone is different of course. If I were you I’d be pushing your gp refer you to gynaecology
Oh that makes alot of sense thank you so much for your advice, im currently trying to get a gynaecologist refferal through my doctor. I presume he reccommended the pill because of the pain and he told me that i shouldn't be looking online at things like endometriosis and assuming I have it, but anyways he doesnt seem to understand the pain im in. I hated being on the pill several years ago as it had a lot of side effects, so i would rather know if i actually needed to take it for the pain im having before i go ahead with it. Thankyou for your help <3
I have Endo was diagnosed after keyhole surgery due to a swollen Fallopian tube. I feel your pain it’s not nice at all and does sound like it could be Endo.
Did the doctor say if you were to take the pill every month and have a 7 day break? Mine are brevinor I believe and I take them back to back for three months the stop for a week. The theory is if you aren’t having a cycle as regular then the build up should or could be less. I have a hormone imbalance as well so this pill was recommended for it all.
My doctor also suggested pain killers and gave me codine which did nothing for the pain but did stop the IBS- another delightful side of Endo. I now take tramadol and naproxen daily to prevent my lower back pain. Even with the pill you can still get pain.
The doctors I’ve seen don’t seem to know much about the condition and I only finally got my diagnosis when they were checking my tubes for something else. Have they offered to look into any keyhole surgery’s at all?
Hope this helps a bit, my friend is currently trying to find out the same as her symptoms sound the same as yours so I know the struggle your going through and lack of medical response if that makes sense.
Please feel free to ask me anything and I’ll do my best to help you x
Thank you so much again for replying, this community is so helpful and kind, I didn't think anyone would reply at all!
That's so sad that you had to go through that, I haven't had any conversations about surgery and I don't think my doctor is taking it seriously, and to be honest he never has done with past issues I've had.
That definitely makes sense for the pill, however I was on it a few years ago and it didn't stop my monthly periods so I might have to try a different type. Also I got so many side effects I didn't want to go back on it! But I've learnt Alot from everyone on here!
I will pray your friend finds a solution to her struggle too💗
I'm learning that you do have to push to get things going with doctors sometimes!
Thankyou for that, I would like to ask about the pain as well because I don't get pain during my whole cycle, just during my period. This gets even worse when I move or even roll over in bed, and also when (I'm sorry if this is too much information) but going to the toilet is impossible it hurts too much and my insides feel so sore!
No problem at all I was the same starting this as a community newbie!
Have you tried different pills? For mine they use the combined pill rather than standard. Others also recommend the coil because that usually even less bleeding when you do but can make it worse for a while while it’s fitted and you adjust, I didn’t feel it would work for me personally but know others in our situation that it has helped.
Do you get any pain before your period? I used to get this a lot as almost a build up before the release of that makes sense. Don’t worry not too much info it makes sense, I was frequently like that during the first few days- I ended up curling up in a circle or lead flat on my back but it’s still there.
The way I used to describe the pain was like there are pixies with sledgehammers in there pulling everything that hurts 🙈 ps not that it should make a difference but I had a male doctor as was more understanding at the time. Hope this helps sorry about the essay
Hi! I had the exact same thing about 8 years ago. I was taken to A&E a few times in agony (the pain is usually in the pelvis area) and nothing was done. They thought it was appendicitis too. I went to the doctor who told me to change my contraception.. I had the pain since I started my periods and it was only getting worse. I insisted with my doctor that it was more than just period pain, until the doctor actually saw me in pain they didn’t really want to do much. The doctors didn’t seem to have much knowledge about ENDO. Finally I was referred to a really good gynaecologist who diagnosed me after doing ultrasounds and we went from there...
You really need to keep going to the doctor and insisting you are referred so that you can get the right treatment and understand what is going on!
I'm so sorry you had to go through all that, it sounds so stressful and painful.
It's interesting we had the same situation too, and yes i almost want them to see me in that pain too so they know how bad it is! When my flatmates saw me they called an ambulance straight away because I was in such a state and in hospital as soon as the pain went they just sent me home with some painkillers. Does endometriosis pain usually go away like that? It eases off through the day sometimes but other times it has been bad for several days.
I’m sorry you’re going through it too, it’s awful when you don’t know the cause and the doctor doesn’t really believe the pain you’re in.
My pain can be really bad for a few days or it can be a few hours but it always eases off into a dull ache for a while, I suppose because of the level of pain. I take buscopan (can buy this over the counter) which helps to relax the muscles during my time of the month and the day/ 2 days before. Seems to help a little bit.
I have been diagnosed with “suspected” Endometriosis literally yesterday! It sounds like your doctor hasn’t really explained the reasoning behind what he prescribed... my GP explained that you can’t 100% diagnose Endometriosis without surgery, which they do try to avoid as it doesn’t cure it, they can remove the tissue outside of the womb that is acting like womb tissue but it is only a temporary fix because apparently it will come back! Apparently no one truly knows what causes it from one person to another so they do do a walkthrough of treatments if one doesn’t work then there is another one we can try. He explained that he was going to prescribe me the combined pill ‘ridgivdon’ (if I have spelt it right 🙈) as it is hormones that control Endometriosis, which is why they try to control it with the pill as it is altering said hormones so it helps suppress the symptoms. He prescribed me 3 months and told me to take them back to back with out a break and have a week break at the end and see if this helps I’m guessing this is what happened with you?... I need to go back to him during my week break and discuss if it has helped the pain and symptoms I have had, if it has great! If not we will try something else... but apparently the only way to completely get rid of Endometriosis is to have a full hysterectomy and that is classed as an absolute last resort. I hope this helps you see some of the reasoning behind their decision to prescribe the pill and I wasn’t just fobbing you off... but I’m sure if you explained that this method isn’t working for you and you would like to try something else then hopefully they should be more than happy to prescribe you something else?
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