letter from hospital, but i really cannot understand it as it contradicts itself.....wondered what you thought

i haven't posted for quite a while but have received a copy of the letter that the consultant sent to my GP, and i'm really confused.

Going back over my symptoms etc, i have been seeing my GP for 2 years which is when i felt i could not cope any longer with how much my periods were affecting my life, and the pain that i was in.

my periods had always been a problem but i just accepted that it was normal, but the last 10 yrs things became so bad and my family life and work suffered so much i knew i had to get some help.

periods had become very erratic, so heavy i couldn't leave the bathroom sometimes let alone the house, pain that was similar to labour like pains (its the only thing i have to compare it to) - when not on period i always have a tugging/pulling feeling in my lower left pelvis, that would range from an ache to full on doubling over pains, always have lower left back pain, these pains do get worse if i become constipated, but then bowel movements can range from constipation to diahhrea, painful sex and so many more symptoms but i think you get the picture.

anyway, my gp (who is wonderful) sent me for a scan, they found i had a thickened endometrium and sent me for a hysteroscopy and biopsy on the lining. at the time of the hysteroscopy they suggested that if biopsy came back normal then the next treatment offered would be a mirena, so i thought whilst i was there i may as well have it fitted so i did. the biopsy was normal (i thought it would be) but the mirena caused me many issues, the pain was unreal, the bleeding was all over the place and i kept being told give it time, and i have. inthe meantime my doctor sent me for an mri and they found a large cyst on my left ovary, so they said this solved the left pelvic pain, and that this cyst they suspected was a chocolate cyst. i also have fibroids but consultant said they're fine.

i was refused a laparoscopy due to my weight, which i completely understand, however i did not like the way i was spoken to, and it was implied that my weight was causing these problems, which i knew the weight wasnt helping but it wasnt the cause.

since all that though at the beginning of the year, i have shed 4 1/2 stone, i am still overweight but i have reduced my BMI to required safe BMI to perform the lap. even with the weight loss i am still suffering the same problems, i am a completely different person from what i was, i exercise everyday, even though i am sometimes in alot of pain, but i stick to mainly walking fast and some swimming, i am much fitter and the weight loss is steady and i shall continue.

i last seenthe consultant in july, he agreed to remove the mirena and do an ablation, themirena has caused so many issues and has not helped overall although i can say it has slightly lightened the flow of my periods but pain wise it has only increased it. i have had some hair thinning too, connected i'm not sure but the first three months when the mirena went in the amount of hair i shed was unreal.

after a really bad week last week, pain wise, you know one of those weeks where you just want to give up, i went to see my gp to see if they would consider doing the lap at the same time as the ablation, she said she would ask.

i received the copy of the hospital letter today and will put it here:

Thank you for your recent letter about this woman who was seen by my colleague in the summer. She is currently on the waiting list for endometrial ablation.

It would be possible to carry out a diagnostic laparoscopy at the same time. I suppose it is possible that she may have endometriosis, but on balance i think it is not very likely.

It would be very helpful if she could continue losing weight, as this will help reduce the risks of surgery and anaesthesia.

i cannot work out if they are agreeing to do the lap at the same time or not, and also why put she may possibly have endo but not likely, this man has not even met me, it seems none of them have looked through my symptoms, there is a reason i get so much pain, and they have done all other ways of investigating and now this is the only way.

it has upset me a little again, it makes me feel like a fraud, the pain and bleeding i experience is not anywhere near normal, all i want is to try and live some sort of normal life, which is why i hope and pray i do not have endo, but surely it must be something that has to be ruled out.

i'm sorry its ended up being a long one, really tried not to be xxx

8 Replies

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  • They said the same thing to me before finding endo and possibly adeno too. Until they do a lap they won't know. It sounds to me like they'll do them at the same time.

    Good luck x

  • I would have thought that you will attend a pre-op assessment before your surgery. Write down all the questions that you have as sometimes they go right out of your mind. This is where you will probably sign a consent form and have the opportunity to ask questions.

    It sounds to me that they will do a laparoscopy (and remember that laparoscopy just refers to key hole surgery, so is just the approach used).

    You clearly have endometriosis type symptoms, and know your own body better than anyone, so stay strong.

    Really well done for getting fit and losing weight!

    Kay xx

  • Hello :)

    I agree with the other ladies, it sounds to me as if they are going to do a lap when you have your ablation. I know what you mean about how the letter was written, but the person who wrote it knows nothing about you so I wouldn't give it a second thought.

    What I mainly wanted to say though was well done on the weight loss, that's phenomenal! You must be so proud of yourself, and rightly so :)

    Lots of love, Chrissie xxx

  • I can't believe just exactly how much this sounds like me with the symptoms!!! Have had my 2nd lap and CT recently, all fine, my 6cm ovarian cyst had disappeared when they went in to remove it so I assume it burst as I spent 3 days in hosp on morphine, have had the week from hell pain wise and the covering consultant I saw tried to discharge me! Am going to see someone else Monday with a 4 page letter of every symptom I have and how it's ruining my life, so I totally agree with the other poster here about writing stuff down! Massive congrats for losing weight, it's not easy at the best of times least of all when you feel so rubbish, I hope you get some where with it and get some answers xxx

  • Firstly well done for losing so much weight hun, you must be very proud of yourself keep it up :-)

    Your symptoms are very simular to what I am experiencing like mentioned above it does sound like endo but if you are experiencing pain when your not on a period then it could also be adeno which is what they think is my problem and I will find out for definite when I have hysterectomy on 31st dec.

    Also yes write everything down you want to ask or question no matter how trivial it is, nothing about what we are going through is trivial and any little weird symptom could be an indicator or clue to what exactly is going on.

    I really hope you get your answers and get the treatment you need to make your life so much more better.

    Best of luck hun and all the best xxxx

  • I also agree that it sounds like they are going to do the lap. I wouldn't take any notice of them saying it's unlikely to be endo, I was told the same thing by a consultant 2 years ago and made to feel like a nuisance for wanting to go ahead with the lap. Now here I am having been finally diagnosed with grade IV endo! Good luck x

  • thank you all for your comments, i knew i'd get some sense here - i so very often come away from the hospital etc feeling like i must be imagining all this, i always get very intimidated by doctors/consultants and each time before an appointment i swear i will be more forceful but i never am, i just nod away. the odd time i have taken a list of symptoms, and i keep a diary of bleeding as its pretty much everyday, not constant but there is a bleed everyday, but they dont even look at it.

    i had my pre op at the last consultant appointment in july, he sent me straight up to the pre op ward, i assumed by that, that i would have the ablation within 4-6 weeks, but apparently its up to 18 wks after, not my idea of a pre op, especially seeing i have lost at least 2st since that pre op but hey ho.

    again, thank you all so much, you have all made me feel like i'm not going mad (no more than usual anyway lol)

    take care xxx

  • well done for your weight loss ,

    They said the same to me ,,then when they found endo all over and they said i had ado too,,they said they was very suprised at them findings coz they didnt expect me to have either ,,well i wasnt suprised id been telling them for years xx

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