So yet again I drag my half broken body to the Drs to be undermined and made to feel a fool to be told if my pain is daily if can't be endometriosis especially if I haven't had a period for 6 months due to depo I cld just scream but I left n cried all the way home something needs to change its really bad wen u have confirmation of an incurable disease but constantly feel your on trial at the doctors no I can't have an Mri and to make me feel better my bowel symptoms are probably wind and all this from a reasonably young female doctor argh I'm not upsetting myself with ignorant Drs anymore I just hope my bsge ref comes quick
Fed up with stupid Drs ! Endo is apparent... - Endometriosis UK
Sorry to read this. Think most of us on here know how frustrating some doctors can be. I've always founder female doctors to be less understanding, I feel like they think "I get menstrual cramps too, so just deal with it!"
I was once I'm A&E in crippling pain only to be told I just need a poo. And that there is a lot of poo inside me. And just a few weeks later I had emergency surgery to remove a 15cm cyst plus 3 other smaller cysts.
I've found my BSGE hospital to be amazing. They let me talk and they actually listen and believe what i say.
Hopefully your appointment comes through soon. And from personal experience, you may want to phone them up prior to your appointment and make sure they have your notes from your existing hospital. X
There is a huge amount of ignorance in primary care which is astonishing given how common this disease is. They don't understand what it's like, or what the pain is like, or the anxiety. Let's face it, a significant number of doctor's won't even consider it as a possible diagnosis. I had to go to my GP's for a repeat prescription for norethisterone last week and the nurse I saw point blank refused to prescribe it because I had already been on it for 3 weeks and she wasn't comfortable with me being on it for longer than that. I'm taking it as a last desperate measure after decapeptyl failed because my pain is unmanageable. I had to go back and see someone else (my usual nurse) and therefore use up another appointment to get it. The last time I was in A&E when I couldn't manage the pain with what I had at home, I was offered paracetamol by a junior doc who admitted that he didn't really know much about the drugs I was taking or how to help me. I mean, seriously. Paracetamol. I'm bleeding internally, and he wants to give me paracetamol.
I spent 18 months being told my constipation, mucus and bleeding from my bowels were just IBS. I have 2 very large nodules of endo growing on the bowel.
Interestingly enough, when I was at the BSGE centre last week I had a very interesting conversation with the female doc who did the scan who said that there is a real problem in primary care with docs failing to consider endo as a diagnosis (and telling women it's IBS) and leaving women for years without treatment or support. It really is rubbish.
This conversation has helped with an important decision, thank you. Definitely changing fertility clinic. Similarly, my consultant told me my pains at different times of my cycle couldn't be my endo and he dismissed the bloating too. Even though I knew it wasn't right of him to dismiss me, my partner convinced me that he is the expert... I'm guessing they only want to deal with what their speciality/ pet favourite pathway is...
When i went to the hospital 4 years ago with severe pain, the doctor told me that it could not be endo because i had pain outside my periods !!! Even though i had been experiencing horrendous pain during my periods for close to 18 years, i had all the classic symptoms, and the pain had just been getting steadily worse and had started consuming more and more days. I also told him it was horrible during ovulation after which it became tolerable. Still he did not think it was endo. Now after 4 years that have included countless appointments, a lap, 2 cyst aspirations, 8 months of lupron, 3 different kinds of birth control, 2 failed ivfs, accupuncture, endo diet, countless supplements and what not, i am still struggling and the pain now consumes 20-24 days in a month. It is beyond ridiculous that women have to struggle so much with this disease and yet doctors are so ignorant about it.
I think they are just ignorant some times they know purely what they read from probably an old text book and are completely blind to the extent of this disease something u don't expect from the "medical experts" hopefully as times goes by with it being more talked about (especially the fact that it varies woman to woman) things may change but it seems Drs are taught only half the story and its pot luck whether you get one who understands or one who's certain they know better about ur body than u xx
I'm hoping that, from the replies, you can see you're NOT alone. I'll be blunt about this...
There is a HUGE problem in the diagnosis and treatment of Endometriosis, because many people do NOT seem to know much about it, and this includes medical staff. Unless a Doctor or Gynaecologist has actually done some sort of specialization in Endo, it is highly unlikely that they will consider it as a possible cause of a woman's symptoms. ALL manner of medical staff can be ignorant, including G.P.s, Nurses, Gynaecologists, Medical Receptionists, A&E Staff, Consultants... their job title has nothing at all to do with whether they understand, or not. My feeling is that, because many are ignorant about Endometriosis, they fail to even consider it as a potential diagnosis. Instead, most Doctors tend to look for "easy answers" first, usually attempting to "diagnose" you with a more common illness (even though the diagnosis may be wrong!) before ever considering Endo (if they consider it at all!). Thus, many women are told that they have IBS, stress, gas, a tummy upset, period pain... and many other nonsensical things, before they ever get to hear of Endo.
Ignorance and lack of education regarding Endo can also lead medical staff to make other serious blunders. They may dismiss symptoms as "not being Endo related" (even though they could be!). This is probably because they are not aware of all the symptoms that Endo can cause. Added to this, many are unaware that Endo can cause cyclical symptoms that come and go with menstruation; BUT it can also cause symptoms that are there all the time. Finally - just as with friends and family - ignorance can lead medical staff to make silly or offensive comments (e.g. accusing you of making a fuss about nothing), or to ask insensitive or intrusive questions. This whole thing is UNACCEPTABLE because it clearly shows that the medical community DO NOT know as much as we might like to think; AND it also shows that when they lack knowledge, they can be just as INSENSITIVE as any other ignorant person.
Please note that, sometimes, medics can appear to be unhelpful, or not to listen to you because they are undertaking RESEARCH. Many hospitals and GP practices get involved in research; sometimes they research Endo. This is perfectly acceptable if they have asked your permission for you to be included in the research. However, it is becoming increasingly common (due to "Big Data") for research to be undertaken which uses patient information WITHOUT their consent (the claim is that information is anonymous, but there ARE risks that you CAN be identified). If you suspect that your diagnosis/treatment is being affected or delayed due to possible research, ask whether research is being undertaken. ALWAYS ask to know what use your personal information may be put to. If you DO NOT agree with your personal information being used in research SAY SO.
The TRUTH is that Endometriosis DOES happen - it is just as likely a diagnosis as any other illness. Therefore, a woman presenting with symptoms of Endo should be LISTENED TO CAREFULLY and TAKEN SERIOUSLY. Endo can cause a HUGE range of symptoms, which vary according to where the Endo is located in the body (i.e. where it grows), as well as how large and how deep the growths are. For more information on symptoms, read this really comprehensive guide:
Symptoms of Endo can come and go with your periods (cyclical) - for example heavy periods, intense cramping, severe period pain... OR they may be permanently present. Constant (non-cyclical) symptoms can include anything from fatigue, to lower back pain, to painful urination, pain during intercourse, or pelvic pain. See the above link for a good guide to symptoms, according to where in the body your Endo is.
I can utterly empathise with your experience, as can many other women who have Endo. On average it takes about 51/2 years for a person to be correctly diagnosed with Endo (info from Endo UK 2015 survey). In my case, I had to suffer for over 9 years before getting an accurate diagnosis. During that time, I was told it was "stress", "IBS", "period pain", "all in my head"! I was misdiagnosed at least twice - with IBS, then with Polycystic Ovaries! I had to keep forcing myself to go over and over to the G.P. even though I knew they would not listen to me. I had to fight with Doctors to get the correct diagnosis. The whole experience I had was embarrassing, humiliating, painful, rude and NOT AT ALL what anyone would expect of the NHS! Still, it seems that this IS how the NHS treats people with Endo! I started to look my symptoms up ONLINE, and had to suggest to my G.P. that I may have Endo! SHE (yes, a woman!) still doubted me. It took about 4 years just to get a referral to Gynae! It finally turned out, in 2011, that I was diagnosed with Endo. My first Lap was a DISASTER because they Gynae I had was incompetent. I then went to a BSGE centre, and it was confirmed I had STAGE 4 Endo, with DEEP INFILTRATING Endo in my Utero-sacral Ligaments! No wonder I was in such pain! Meanwhile, family and friends were unsympathetic and lacked understanding; my employers were bullying; my social life was also affected - ALL due to untreated pain and Endo symptoms. I ended up having 4 surgeries, as well as trying the Pill, the Mirena, having a colonoscopy and a hysteroscopy with D&C. I wonder? Could these have been avoided (or at least kept to a minimum) if someone had got my diagnosis right sooner?
Anyway, my advice to anyone who finds medics are not listening is this:
1. Keep a symptom diary in which you record all symptoms, when and where they occur, plus how they make you feel.
2. Keep a diary also of what medication and treatment you try. Document what it is, when you try it, and whether it works or not. Also, record any side-effects.
3. Take these diaries to ALL appointments with you, as they may provide vital information. Also, they could help you to spot patterns to your illness, or to recognize what treatments are most appropriate.
4. Read up as much as you possibly can regarding Endo and its symptoms. Use your knowledge to ask questions at appointments, and to help you stick to your guns. YOU know your own body the best!
5. Never be afraid to ask for a second opinion if you do not feel that your current Doctor has got it right.
6. Never be afraid to ask for referral to a BSGE accredited specialist centre - there are many of these in the country, and they are the best places possible to have your Endo treated because the staff there specialize in dealing with Endo. Also, these centres are usually staffed by surgeons qualified to undertake even the most complex Endo surgery.
7. Never be afraid to ask to see your medical records, or to have copies of them. Indeed, sometimes this can help you to spot things that the medics have missed - it can also help you highlight errors or inaccuracies.
8. Keep an open mind regarding treatment. Make sue you are aware of all the options, as well as their benefits and risks. In choosing a treatment, consider your lifestyle and whether you wish to remain fertile or not. ALWAYS choose the treatment that best suits YOU. Don't allow medics to force a treatment on you. If a treatment fails to work, or has side-effects you cannot cope with, you are perfectly within your rights to ask to change it.
Apologies for the long reply. However, I do hope that it contains information which may be useful to you, or to anyone else who reads it. Wishing you all the best, E. x
This reply is not only to you - it is to ALL women with Endo, and women who suspect they probably have Endo...
We are SO NOT a bad bunch! There are many things that we forget to remind ourselves of, in our daily struggle living with Endo, or symptoms of undiagnosed Endo. These are things that show just how STRONG and how CAPABLE we really are. What we ALL need to remember is that most women (and men) DO NOT have Endo, and so they live their lives with NO IDEA of what it is like. In doing this, they take many things for granted that women with Endo cannot. However, women who DO have Endo still manage to do a huge load of things that the Endo makes difficult, but that we still try to cope with:
1. We do housework, and run homes, despite the pain and symptoms of Endo.
2. We hold down full-time, or part-time jobs, despite the pain and symptoms of Endo.
3. We undertake, and often complete with good grades, our studies and education, despite the pain and symptoms of Endo.
4. We do the shopping, keep our gardens tidy, mow our lawns, run errands, complete D.I.Y. if and when we can, despite the pain and symptoms of Endo.
5. We try as best we can to maintain hobbies and social lives, despite the pain and symptoms of Endo.
6. Those of us who were able to have children do their best to look after and raise their kids, despite the pain and symptoms of Endo.
7. Those of us who are unable to have kids try to cope with infertility and disappointment as best we can, despite the pain and symptoms of Endo.
8. We try as best we can to make time, and to do various activities, with family and friends (the ones who genuinely care about us, and who stick with us throughout the difficult times), despite the pain and symptoms of Endo.
9. We do our best to be there for others if they need our emotional support, or a shoulder to lean on, despite the pain and symptoms of Endo.
10. In summary - WE do EVERYTHING that any woman who DOES NOT have Endo might do, despite the fact that WE DO have the pain and symptoms of Endo.
I reckon, considering the above, that each and every one of us who has struggled with Endo should take a long, hard look in the mirror at herself... and then say the following words...
"Hey, I'm not so bad after all. In fact, I'm pretty amazing!"
... because, no matter what we might think - or what other people might try to tell us - we ARE pretty amazing. Because WE live our lives as best we can despite everything that Endo throws at us. WE achieve things that other people who DO NOT have Endo may struggle to achieve.
I reckon that THIS is what the Government, the Welfare Benefit System, our employers, the NHS, our families, our friends, our colleagues, people we meet... ALL need to recognise. Women who have Endo are SO NOT "failures" - we are COPERS!
Hold THIS in your heads the next time any of you feel bad about yourselves. Hope it helps. E. x