Awaiting my results

Hi everyone I'm not 100 percent if I even have this condition yet but .. I have had abnormal bleeding for over a year now ever since I had my little girl 16 months ago .. Since then Iv been back and fourth with the gyne at the hostpital. I had a colposcopy last year that only came back with cin1 .. I had the marina coil fitted for my symptoms to help but haven't months later my bleeding was getting worse. I am so tierd all the time numerous blood tests and nothing is showing up so just recently after being put on noristerone for a number of days and having been still bleeding and getting allot of pain I was sent for a hysteroscapy .. She consultant said she couldn't see anything with the naked eye but has taken a biopsy which was two weeks yesterday so I haven't had my results but have now had a letter through for an appointment to see this doctor in clinic in 5 weeks which is quite quick as I know there is a long wait for gyne appointments at my hostpital at the minute and I wasn't expecting to see her again as there was no talk of another appointment so I thought I wouldn't be seeing her again I would just get my results through with nothing coming back on them? . I'm

Now panicking having this appointment because I haven't had my results brought yet .. Iv googled my symptoms and seem to of self diagnosed my symptoms trying to put my mind at rest and it has come up with this condition? Could anybody tell me how long they waited to be seen and how there were diagnosed? Did you get your appointment through before your results? And does this sound like this could be what I have from the symptoms I have said I have. I did ring the gyne ward today and just spoke to a nurse on duty who did say they would only usually bring you back in if they have found something and to discuss this. So I'm in panic mode at the minute .. Any help or advice would be much appreciated. Thanks allot Zara x

7 Replies

  • Hi! Do you regularly have painful periods or just abnormal bleeding? Endo is diagnosed by laparoscopy, where they give you an anaesthetic then make a small cut in your belly button and have a look around with a camera. I've never heard of abnormal bleeding being a main symptom of the condition, but some people get it as a result of the treatment for the condition, but I may be wrong!

    Endometriosis is where you get patches of womb tissue growing outside of the womb. This is mainly around the pelvis, attached to the ovaries, the outside of the womb, on the bowel, bladder and spaces between, but there are lots of cases of it spreading further afield to the lungs, stomach, even the brain (but that's very very rare!). Every month in response to normal female hormones the womb tissue bleeds so you end up having periods in those areas. Because there is nowhere for the blood to go, it stays where it is released and just grows, you then get what they call chocolate cysts. The body detects this bleeding tissue and the surrounding tissue goes into a spasm type thing to try and expel what shouldn't be there. This gives the woman extra period pain in each of the other areas as well as regular period pain that is 'normal'! Also these areas of womb tissue can act like glue and stick things together. Some people have their bladders stuck to their bowels for example, which causes lots of other unpleasant effects. These are adhesions, and are hard to treat surgically and can be a big procedure, if in fact it's possible! You also get scar tissue forming which can weaken structures and make even routine surgery difficult.

    I'm not a doctor so I can't say for definite what is wrong with you, but it sounds like more of a localised problem in your womb area rather than endo, but I'm not qualified to say that for sure. I wouldn't worry that 5 weeks is quick, from my own experience if there's something very wrong you would be seen much quicker (I think there is a 2week window for a cancer diagnosis for example, but again I'm not a dr so can't say that for sure but I have had lots of family members who have had cancer, so I've been through it quite a few times!). Around 6 weeks is a normal post-procedure follow up appointment. This could mean that they have found a cause of the problem and have a plan of what to do, or they haven't found anything but want to suggest another test that they can do to help you, for example a laparoscopy to have a look around while you're asleep. I know it's easy for me to say don't worry, but worrying won't help you, it will only make you feel worse. I would also not recommend symptom searching online, unless it's using the NHS website, as lots of the info online is at best inaccurate, at worst it's completely made up!

    I hope I've helped a little with my essay length reply lol!! I hope you get sorted soon, and start to feel better xxx

  • Me again! I forgot to say that it's normal to get an appt date before you get test results, as it's more of an automatically generated thing. Because you aren't well and need to find a cause of it, you were probably going to get an appt to discuss things with you anyway. Because these Drs deal with these things everyday they sometimes forget that their patient isn't necessarily familiar with the way hospitals work, so maybe they thought it was too obvious to mention a follow up if that makes sense! What I mean is they prob generated the appointment without having any results, just to discuss things with you whatever the results were! I know the nurse said differently and obviously I can't say that she's definitely wrong, but in my experience with hospitals it would be unusual for them to have results and not tell you that's why they're bringing you back! My dad has a serious heart condition since just after I was born and I'm now 33, my mum has had female cancers along with other close family members, and I was diagnosed with endo when I was 16 and have it severely enough to have had 6 laparoscopies and one major surgery. I also have two other health conditions that require regular tests and procedures, so that's how much experience I have with hospitals. I also have a PhD in medicine and until recently worked alongside consultant surgeons, so know a bit from their side of things too, but I'm not clinical so don't practice medicine so there are gaps in my knowledge so my replies are just educated opinions, rather than total fact! Hope that ive been able to set your mind at rest a bit! Really hope you feel better soon!xxx

  • Hi thanks for your reply .. From what iv read endo does not sound like what I have at all. I think I have just over worried my self because I expected to get my results as told not an appoint which wasn't discussed. I am going to ring appointments in the morning and ask what this appointment has been made for then ring results and ask if my letter has been sent out yet. Thanks again for replying I will let you know how I get on! Sorry to here you were diagnosed with this conditon at the age of 16! :( from what iv read that's really rare but as I'm beginning to realise no diagnosis goes by the book. :( thanks again xxx

  • Thank you too! I hope everything turns out ok for you xxx

  • Hi I received results you were right I don't have endo but I have chronic endometrisis which is an infection in my womb? I am still in the dark .. Again Iv been googling which I shouldn't be .. It does say can usually be treated with antibiotics but if let untreated can cause problems and mine has been left untreated I'm guessing as Iv been dealing with these symptoms that have been getting worse for over a year :( xxx

  • Oh dear! At least you have an answer and a diagnosis, so you can start to move forward! I hope you'll be lucky, and even though it hasn't been treated there won't be permanent damage! I would def ask your dr why it wasn't diagnosed before...when I read your post I thought it sounded like some kind of problem causing inflammation in the womb lining, but I thought it couldn't be that as they'd have tested for that or been able to see it, especially with symptoms being linked with the birth of your daughter, plus having a mirena can lead to that too (it's one of the things I was warned about before they fitted mine!). I think that once you get a treatment plan started and you know what's happening, you are definitely due some answers! I really hope you'll be ok, the positive thing is that if the infection/inflammation had done much damage you would think that they would have seen it in one of your tests, as the structure of the wall of the womb would look different. I know that this might sound odd and hope you don't take it the wrong way, but I'm pleased they found something...I had so many negative test results in the beginning, and I began to doubt that I actually had anything wrong, I thought I was going mad! Even though the diagnosis was a shock to me, and at the time it was the worst thing I could have imagined happening to me, I was so relieved and felt vindicated, I'd told them I was ill and I was if that makes sense! So I hope that this marks the turning point for you, and that by summer you'll be fine and this will be a memory! Take care xxx

  • Thanks so much .. Yes your right I do think why have they not found this before and only started to investigate my womb .. Because they have just been concentrating on my cervix for all this time so this is why it has been missed. It makes sense why I'm so tierd all the time now .. I'm literally sleeping all the time. But soon it will hopefully all be sorted .. I will be writing down lots of questions I have to ask so I don't forget . Iv also got a follow up colposcopy in two weeks so I will ask all of those questions to. And yes I totally understand what you mean I have felt like that to .. Like iv just been making it up. Glad they have found something that isn't to serious and should be treatable. Thanks again for your advice xxxx

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