Could I have some help please

I have been Poorly since march 2010, I had a lap then to look inside by a general surgeon and he took my appendix out thinking it was that. When went back for check up he said it wasn’t. Anyway that’s a long story but since then been seeing doctors and having tests but still nothing. Saw Gyni doctor end of last year and she said it would defiantly not be endometriosis she was horrible saying they would have seen it in operation. (But would a general surgeon be looking for that) and also could that of been the start of it.

Anyway I got moved to another hospital and they have been great. I was put on prostap for six months and the pain was a lot better. But now has come back.

Been in hospital again just recently and a doctor said to me he wants to look inside and it should be urgent. He thinks it is endometriosis. So I am having operation next Wednesday.

Please could I just ask some questions I have-

Has anyone else had Endometriosis really bad and not seen it on any scans at all?? (ive had lots of scan but nothing shown)

Have other people been fobbed off? And then found out its endometriosis

How long has it taken to be diagnosed?

What are your main symptoms?

Also had last prostap injection in middle of June could this still affect seeing anything?

And anything else?

Thanks very much for your help. I am just so worried this man doesn’t find anything then back to square one. But like everyone and mum and dad keeps telling me he defiantly will.

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  • Hi -

    Sorry you've been having such a bad time. Endometriosis is difficult to diagnose, and often gets missed by doctors (it took 20 years for them to diagnose me).

    One of the reasons it's hard to diagnose is that it doesn't show up on scans, so your situation is completely normal. It can only be diagnosed by surgery, which of course doctors don't want to do unless it's necessary (surgery is always expensive and potentially risky).

    The symptoms are very variable, depending on where the endometriosis is. But pretty much everyone on this forum will tell you about pain, and very bad periods sometimes with other stomach symptoms (vomiting, diahorrea etc). A lot of people also have IBS, so there can be confusion about what's caused by endometriosis and what's caused by the IBS.

    I can't comment on the prostap.

    Good luck with your surgery next week. I hope you get some resolution to your problems. For what it's worth, my own situation improved a lot once I had a definitive diagnosis and some treatment, and I hope things work out well for you too.

  • Thank you very much for your help.

    Since I came off Prostap in June, my periods started again not long after really. And when I was in hospital nearly four weeks ago I started with it then so they saw how bad it was but they couldn't do anything they said. But last few days I have a feeling it could be coming again very soon as ive had all the side effects before period normally starts with spots and stuff. Which I have been really worried that I will be on that when I have the operation, which really scares me. But after what u have said its maybe a good thing??!!!

    He said about putting a camera up there which im worried about that too and especially if im on period.

    This surgeon is really good he has got me in urgent, so only waited 4 weeks. He says if it is that he will do whatever at same time. and most likely fit the coil.. which worried about that too. lol

    Did u come out of hospital same day when u had ur lap? when I had lap 3 years ago to look in and took appendix out I was no way to come out same day. which im only of into day surgery.

  • Hi Katie -

    Don't worry about the camera - this won't hurt, and it helps them see if there are any other problems. In my case, the camera found a fibroid which we didn't know was there, so it's a useful procedure.

    I assume it's a mirena coil that they'll fit. Again - don't worry. Lots of us have that, and while some people do have side effects, a lot of people find it really helps. For me, certainly it's reduced the pain a lot.

    As for coming out of hospital, it depends a little bit on what they do, but I'm assuming you're having a laproscopy and hysteroscopy (which is fairly typical). The first time I went in I had to stay overnight, but the second time I was allowed home on the same day. It really just depends on how well you recover from the anaesthetic. They like to know that you can get up and go to the loo before they'll let you go home. And they usually give you some pain-killers to take with you.

    You'll probably feel a bit sore after the surgery. Take a loose dress, hold-ups and low-cut knickers, if you can, as this will mean that you're not wearing anything that could constrict your tummy and give you more pain. When you get home, treat yourself as though you're having a bad period and go to bed with a hot-water bottle and whatever else you find comforting (book, music... whatever works for you). People recover at different rates, so be patient with yourself while you're getting over it.

    All the best!

  • Ive also had MRI scan and they found nothing? Would that see endo though?

    Ive been thinking a lot today about it and im getting bit worried cos I just want them to find something when they go in on Wednesday. Its all the symptoms of it.

    If like three years ago they saw nothing, will that be the same this time? cos I thought could last time it be only just starting to cause me problems and not see anything but now its got worse?

  • Endo is very rarely seen on scans, so it is very common to have 'normal' scans come back. A general surgeon could easily have missed endo- not many surgeons know what endo is!!

    I was fobbed off for 17 years before I got my diagnosis- I started with symptoms aged 11 and it took until I was 28 to get my lap & diagnosis. They diagnosed me with IBS, PCOS, 'bad periods', a grumbling appendix etc... before they found the correct diagnosis of endo.

    I agree with Aquitaine that symptoms vary from person to person depending on where the endo is, but here's a list of symptoms: Pelvic pain (either before, during or after periods- or all the time with no pattern), heavy periods, long periods, passing clots and/or very dark old blood, spotting, painful sex, bleeding after sex, bowel issues like bloating, constipation, diahorrea, bladder problems like painful urination, blood in urine, frequent UTI's. Lower back pain, leg pain, Hip pain, shooting pain up bottom and/or vagina, blood in stools. Nausea/dizziness associated with pain. Tiredness/fatigue/Lethargy, 'Brain fog' (feeling like you are hungover).

    Re the prostap- A surgeon is more likely to spot endo is you are actively bleeding/still having periods as the endo lesions will be darker in colour/bleeding and easier to spot. Ha sthe prostap stopped your periods? That being said I had been on the coil for over a year when I had my lap and hadn't had a period in over a year and they still spotted the endo.

    Best of luck with your lap, I hope you get some relief very soon x

  • Thank you very much for your help.

    Since I came off Prostap in June, my periods started again not long after really. And when I was in hospital nearly four weeks ago I started with it then so they saw how bad it was but they couldn't do anything they said. But last few days I have a feeling it could be coming again very soon as ive had all the side effects before period normally starts with spots and stuff. Which I have been really worried that I will be on that when I have the operation, which really scares me. But after what u have said its maybe a good thing??!!!

    He said about putting a camera up there which im worried about that too and especially if im on period.

    This surgeon is really good he has got me in urgent, so only waited 4 weeks. He says if it is that he will do whatever at same time. and most likely fit the coil.. which worried about that too. lol

    Did u come out of hospital same day when u had ur lap? when I had lap 3 years ago to look in and took appendix out I was no way to come out same day. which im only of into day surgery.

  • I have had countless scans over the years and took almost 30 years to be diagnosed with a lap op which by that stage the endo was so severe it turned in to a laparotomy (big hole) op.

    None of the scans spotted the endo. it was only in the last couple of years before my big op, that I was switched by a sonographer to having a trans-vaginal scan as she was checking for fibroids (i didn't have them) and she did spot the remnants of an explioded cyst but couldn't find an ovary.

    Next follow up scan- different sonographer- and again I opted for the trans-vag scan and explained that last time an ovary was missing. so she went hunting for it.

    She found it stuck to the back of my uterus and with it an 8cm endometrioma which had not given me an ounce of pain. I had no idea it was there. And it must have been there quite some time.

    So scans are only useful when thy do spot something. just because they don't pick something up doesn't mean it isn't there.

    Endo lesions on the surface of tissues and organs cannot be seen by scans even when they are active and bleeding.

    Endo that has grown into organs might show up as as a kink in the bowel or a swelling in the bowel wall or the uterine wall (adenomyosis) or endo cysts will show up too, basically when it turns 3-dimensional then it can be seen on a scan, but if it remains a surface lesion like a bruise on the skin, it won't show up on x-rays or ultrasounds. It is just too wafer thin to show up.

    Surgery to spot the endo lesions or the bleeding from endo lesions is the only way to get a positive diagnosis, though the appearance of endo cysts (endometriomas) is also a pretty good indicator, so too can be ovaries stuck out of their normal place by adhesions.

    Prostap will not alter the scan outcome, but it CAN affect any lap op.

    If you are having a lap to diagnose and spot the endo, it is much much better to have this done when you are having a period as the endo sites will be actively bleeding and very easy to see. If the endo has been inactive and shut down by taking Prostap or similar period stopping drugs then it can be very tricky to see and remove endo lesions, and the surgeon may miss them and not be able to laser them off or cut them out if they cannot see them being active.

    If you have had a period since the prostap then great news, the endo should be more visible. If you have not yet got your periods back then there is a decent chance they will not spot all the endo and will not be able to tackle it all.

    If the operation is just to look/see rather than actually work on any endo that they do find then you may get a negative operation result but still have endo and may need another surgery at a later date.

    The trouble with endo is for all of us, by the time we do get to have surgery there is often too much of it to be removed in the limited time in the operating theatre and subsequent surgeries are often required.

    If you have a really good surgeon, even with inactive endo, they are usually able to spot the clues to there being an endo lesion in a particular place even if it is not actively bleeding. This is where experience counts for a lot.

    I know it does sound kind of hopeless, but if they do find endo, even when it has been inactive for some time, they can confirm what has caused your problems and they can usually remove that patch of endo right away.

    Best of luck for the op.

  • Thank you very much for your help.

    Since I came off Prostap in June, my periods started again not long after really. And when I was in hospital nearly four weeks ago I started with it then so they saw how bad it was but they couldn't do anything they said. But last few days I have a feeling it could be coming again very soon as ive had all the side effects before period normally starts with spots and stuff. Which I have been really worried that I will be on that when I have the operation, which really scares me. But after what u have said its maybe a good thing??!!!

    He said about putting a camera up there which im worried about that too and especially if im on period.

    This surgeon is really good he has got me in urgent, so only waited 4 weeks. He says if it is that he will do whatever at same time. and most likely fit the coil.. which worried about that too. lol

    Did u come out of hospital same day when u had ur lap? when I had lap 3 years ago to look in and took appendix out I was no way to come out same day. which im only of into day surgery.

  • Oh don't worry at all about being 'on', they are quite used to blood from everywhere else. They have to cause bleeding when they make the lap holes too. Makes no difference to them whether you are bleeding or not as far as practicalities go, but from spotting endo lesions it really is the best situation to be in.

    They tend to take biopsies and so on inside and outside the uterus , so even if you were not on on the actual day of the op you will in all probability have a few days of bleeding afterwards from the vagina even if most of the work was actually done in the tummy region through lap holes.

    If you haven't had a smear test in a while they will get that done too.

    If you want to take the opportunity to have the mirena installed while you are knocked out cold..that is the very best time to get it done too, whether you are on or not.

    the getting it put in the right place is the most painful bit of the process and if you are asleep when that happens, then fantastic. They can use their scanners to make sure it is in exactly the correct position too. much more success from that type of installation than the regular wide awake method which is pushed for time and rushed because it hurts so much.

    I didn't know i had endo when i had my op scheduled, but we (me and doc) decided that getting the mirena put in was the best long term period stopper... and as it turned out it was fantastic when it did eventually get working.

  • Ive also had MRI scan and they found nothing? Would that see endo though?

    Ive been thinking a lot today about it and im getting bit worried cos I just want them to find something when they go in on Wednesday. Its all the symptoms of it.

    If like three years ago they saw nothing, will that be the same this time? cos I thought could last time it be only just starting to cause me problems and not see anything but now its got worse?

  • Hi

    What a nightmare for, its a difficult condition to diagnose as the only way to is a lap.

    I was told by my GP oh its just you,,just carry on with your plans for having children you don't want an invasive operation!!! I went to o the fertility clinic and that's where they scanned my ovaries and there they were the endo cysts. Gp don't know much about it. And because its not a life threatening condition then minimal research is done! Good luck wed let us all know how u get on.

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