True or False?

Ladies,  I have been told by two doctor's that if I pain everyday there must be something other than Endo going on.  Whilst I appreciate there is the possibility of something else causing pain,  i don't think there is. The same pain ramps up the week of my period but I take the max tramadol EVERYDAY for severe left hip, lower back,  pelvis, rectum and leg pain.  My question is,  how many of you suffer everday with pain? Is the doctor's advice another urban endo myth?! 

Thank you x

25 Replies

  • I had this recently! I felt like tearing my hair out! I have pain every single day, and in the exact same areas as you. I'm not going back to that gynae now and have my referral date for the BSGE centre. I so hate it when they say things like that! 

  • Its so hard when you know your own body isn't it? As soon as you have to start having to convince a doctor you sound like you're making it all up! Good luck with your appointment.  I've  got mine next week... X

  • I know hun, the doctors think we're all a bunch of hysterical women suffering from hysteria! I get there could be a number of things going on but you know your body well enough and your mind. Don't pay any attention to that doctor, wait for your BSGE appointment and they will help you. Good luck for next week, don't let them get you down x

  • You're right. I think its in part the reason why so little is known about it in medical circles-its just thought of as 'women's problems'. Thank you x

  • I keep a pain diary and I have been in pain for every day the last week. I am taking co-codamol for the pain. I know it's endometriosis related and if I had a doctor tell me there must be something else going on I would be furious. Why do doctors always assume we don't know our own bodies?

    I went to my GP to get a referral for the BSGE clinic a week ago and I told him "my endometriosis is back". Rather than sympathising he asked "what are your symptoms, why do you think it is back?" While I realise he needs to have something to write in the referral letter, the way he said it was so condescending like he completely doubted me. He also felt the need to prod my stomach to get the exact location of my pain. Listen, dude, if I tell you I have pain in my pelvic area, I mean my pelvic area. I think after having had endometriosis for 27 years (undiagnosed and untreated for 16) I bloody well know what endometriosis pain feels like.

    Sorry, that kind of derailed into a rant. I guess I just needed that off my chest.

  • Feel free to rant,  if you can't do it here where can you?! I hope you get an appointment soon x

  • Wow I have the exact same symptoms and was told the same thing last week. Was told that because the pain was in various parts of my abdomen and no longer seems to correspond to my period (although it's at it most severe on the first day of) then it must be something else. Gave me a Tramadol prescription and sent me away. 

  • That's so interesting maybe we saw the same doctor lol! When I read you're experiencing the same symptoms makes me realise im not making it all up-we can't both be nuts.... can we..!!??? I hope the tramadol helps x

  • Definitely false. It is so annoying that many doctors have such little understanding of endometriosis. I had a mirena coil in so did not get periods at all but had constant pain every day. Thankfully my gynaecologist has been great. I had a laparoscopy in December that diagnosed endometriosis and then a further laparoscopy by a different surgeon in March to remove extensive endo and separate adhesions. Since then I have been pain free and feeling much better generally than I have for ages. I hope you get appropriate treatment and feel better soon. x

  • Wow it is so good to read about a positive outcome! I am so pleased for you (and slightly envious)! Thank you and long may you be pain free xxx

  • Hi

    It sounds like everyone is in the same boat I was told that I had ibs for 2 years before I changed my doctor and got referred to gyni,my new doctor is great she told me that the trouble with left sided pain in women is that it could be bowel issues too because everything is so close together and remember most doctors are just general practice so don't have the knowledge of a consultant but they should be taking everyone seriously to find the reason for your pain,if possible find another doctor and try and see the same one as the will get to know you rather than just reading your notes.

    All the best treez

  • Thanks Treez for the advice I am really grateful xx

  • I suffer pain in other parts of my body legs usually brought on by walking wrist pain arm pain back pain neck pain migraines pelvic pain while body aches in the morning these are mostly every day what I do know is women with endometriosis will always go on to develop autoimmune problems. I've heard I dnno whether this is true but it's what I've heard 

  • Sorry to hear you are suffering so much. Funny you should say that about Autoimmune Diseases I was saying the very same thing to a friend last night x

  • I developed full-body pain as my endo pain worsened. People told me it was psychosomatic. But my blood sugar was out of control. Managing that has helped a lot with symptoms like AM pain, terrible aches, achy joints, and bladder problems. It even lessened the endo pain too.

  • It's definitely false. Most of us, if not all of us have every day pain and it's not always in the same places. My usual pains are in my lower back, left leg and ovary but I have many days when I am aching all over my body on top of that.

    In my opinion some GP's should have extra training or at least read a little more about this horrendous disease. My pain started from lower back that radiates down my left leg and stabbing pain in my left ovary. Because I had endo before, I knew that everything is back. Last week I went to see my GP and ask for referral to the gyno specialist. He examined me and said that I have slight tenderness on the left iliac fossa and it is nothing to do with endo. I knew straight away that he have little knowledge about endo. He adviced me to do some back exercises at home to remedy my pain and  in the end I had to convince him to re-refer me to gyno x

  • I agree. I had an internal scan 15 months ago, (at my request) because I was certain my pain was gynae related. Because it came back as being all clear I thought that meant I was wrong thinking it was gynae and spent the next12 mths spending ££££s on treating pain with Osteopathy, Chiropractic treatments etc. I couldn't get away from the idea it was gynae related then discovered Endo wouldn't have shown! Like you I was told physio would help... Quel suprise it didn't!!! Xxx

  • Yup! After my endo surgeon literally told me to "get a hobby" when I complained of continued pain, he stated it was unequivicolly not due to endo. I spent the next 2 years back and forth with gastroenterologists, PTs, more gynecologists, psychologists, endocrinologists, then chiropractors, functional medicine quacks, and acupuncturists. It got extremely $$$$$.

  • Wow i'm so surprised they both told you that. My gyno (bsge centre) seemed totally unphased when I came him my loooooong list of symptoms. 

     Similar to you I have ongoing pain that fluctuates during my cycle from moderate to severe. I also have joint pain, leg pain, lower back etc...He was very sympathetic and confirmed what I'd already read about inflammation causing pain beyond simply where the endo is, which can cause a myriad of other health problems and pain.

    He also admitted (and I think that I've posted this on here before) that when it comes to how our bodies react to endo, the consultants are pretty much flying blind since every woman will have a slightly different list of symptoms, different levels of pain tolerance, different diets, etc. Our hormone levels vary so much according to diet, lifestyle, stress levels, genes, levels of sleep, other health conditions - you get my point - that they have to follow a pretty vague set of characteristics. 

    I'm so sorry they are dismissing your pain. I felt like i was going crazy and simply turning into a hypochondriac until I had my first lap and the gyno showed me the pictures of what he had found. 

    Trust yourself and as has already been mentioned, track your pain and symptoms as much as possible. 

  • Thank you. That all really makes sense to me. It sounds like you have a great consultant. There are days when I really do feel like a hypochondriac. I'm sure a lot of the women do xxx

  • I'm in pain 24 hours, 365days a year. Some days better than others but I'm never pain free. I have endo and ovarian cysts.

  • Thank you for taking the time to reply. Wishing for better days for us all xxx

  • Such nonsense. I was in agonising, bed ridden constant pain for over a year when I first had endometriosis. Now I am lucky it only stops me living one week a month but if I get tired or run down up in pops again. Everyone has different symptoms. It can affect you in so many ways. Insist on being seen by a specialist and a pain management centre. GPs can be so unhelpful sometimes. I spent that first year terrified I had cancer as they couldn't understand why u had so many different symptoms. The stress from that no doubt made my Endo pain way more severe. There is nothing more frustrating than being spoken to by a GP as if you're completely ignorant when it comes to your condition. It's your body and 9 times out of 10 you're the one who knows what going on. You need help and support not extra stuff to worry about.

  • What a worrying time that must have been for you. I have a two year old son, with the pain and fatigue I honestly don't know how I get through the day sometimes. Poppy can I ask what treatment has increased your pain free days? Xx

  • I'm afraid it's both. I'm at a BSGE centre in London and besides endo which was diagnosed locally another lap with a cystoscopy showed IC along with adeno. IC is know to cause daily pain or pain that intensifies during periods only. I would say as I would anyone be open to the possibility that you may have pain from more than one source as its now recognised that endometriosis that is confirmed is rarely the sole cause of pain from sufferers just like bowel problems are just as likely to be down to IBS as its a co morbid condition as its IC (endometriosis evil twin). Getting a good plan together for your endo will unfortunately involve identifying other causes so you can be as pain free as possible

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