So, I have been left feeling a little confused and lost.
I had an exploratory laparoscopy on Friday. I thought that i would at least be coming away with some answers... Wrong... My consultant has said there is no Endo and that she has no gynae concerns.
So, what are all my symptoms? I'm so lost. Everyone keeps saying that its good news, but right now I am failing to see the positives.
I have suffered with abdominal pain for as long as i can remember and extreme pain after intercourse, combined with nausea and hip pain which can be debilitating.
I am now waiting to go back and see my gastro for further tests of the bowel and intestines...
Can anyone relate?
K x
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Karii-Ann
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Hi Karii I would look up Lindle on here and look at her post on how to find a specialist. Then go back to GP and get a referral. General gynaecologists often miss endo.
I am in the exact same boat! Although was told I have retrograde mestration which is a cause of endo. So I am now waiting to speak to my GP to find answers! But don't quit if your still in pain! X
I had the same after my lap nearly 2 weeks ago - went in hoping for answers and came out being told no endo, possibly could be hormones and if symptoms continue he has suggested trying a GnRH analog to suppress ovarian function.
Prior to the op my gynae seemed pretty sure it was endo so I totally get how lost and confused you feel. I have my post op in March so am going to have a good chat then, but aside from keeping an eye on my symptoms I am a little lost too!! I have read that endo could have been missed by a general gynae and that referral to a specialist centre may be a good next step.
I'm currently still recovering from my op and having pain at the end of urination and afterwards, along with some other left sided pains so am off to the doctors tomorrow to see what they say! This was a symptom prior to my lap, though does seem to be worse now so I'm wondering what the next step is.
I get that feeling. Pre op, she was saying; yep Endo, due to IBS symptoms reckoned that the bowel was stuck somewhere... She sounded so sure. Now this has left me so deflated.
Post op, I'm doing fine. Abdominal pain is there lower right and nausea still likes to creep up!
It is massively frustrating as really all we are after is answers! Hope that you get some answers to.
Glad you are doing well post op - I have done OK apart from pain during and after urinating, but put it down to an infection they found just before op. But doctors called this morning saying no infection left and they want to see me. Bit worried but glad I'm going as I want to discuss the bladder pain and also see where I go from here!!
Ditto!! Had my lap yesterday was told they was 80% certain it was endo last year but didn't want to give me a lap. Just wanted me on all the hormones. I refused and eventually got my lap yesterday to be told all clear no Endo. Did feel deflated yesterday but feel more positive today. Endo isn't curable and whatever is wrong with me might be so keeping positive. They said same probably hormones or gastrointestinal related!! Recovering from lap had to sleep in armchair last night due to gas pain in shoulders was excruciating when I tried to lay down and raise my feet. On the peppermint tea etc hoping it will pass soon. I look like Bagpuss this morning. Dreading my first shower my belly button incision was very bloody yesterday so not looking forward to removing it! Anyway keep positive it's all we've got. Hope all you ladies get an end to pain and problems. Dolly Parton was right sometimes it's hard to be a woman!!! Xx
Bless you. The first shower was the best ever! I struggled most with my throat! I demanded water from every professional that came in The shoulder pain subsided very quickly, so fingers crossed for you!
Ok we ourselves with our experiences need desperately to educate gp's and regular gyni's about what disease firstly can look like as there is about 4 stages and colours so it can be easily missed by inexperienced gyni's I believe that anybody with even suspected endo should go straight to a specialist centre as it is frequently missed by regular gyni's!!!
My own personal story I will cut short as I could right a book on it.... On my first lap (by a regular gyni) he did diagnose mild endo on my ureters but thankfully didn't treat I then had a long battle for the next year backwards and forwards to said gyni whom had reluctantly agreed to a 2nd lap it was all booked in but I had no confidence in his ability to deal with this and after doing my homework I found a centre not too far away from me and the consultant there had really positive reviews from other patients so I went back to my gp and asked to be referred to him... OMG what a difference he is an amazing guy whom listens and takes you and your pain seriously and is genuinely interested... How refreshing...
He had said to me prior to surgery that he may not find anything but was prepared to have a good look around...
After 4 hrs in theatre he removed 2 deep infiltrating nodules one of which was hidden behind my ovary and the second on my uterosacral ligament he had to free up both ureters and there was widespread superficial disease all over my bladder but it was hidden at the front also there was a spot in my pouch of Douglas!!! So please if you know in your heart that something is wrong trust your gut and push to see a specialist..
I have now been pretty much pain free since my surgery in June 2015 and it was only then that I realised what a massive it had had on me and my family.
Hi, I had a lap last week and was told no endo - perhaps it's bowel related?
Well, considering ive tracked my pain and my hormone levels, and there is an irrefutable correlation between the two, that I'm coeliac so I definately know my bowels (I know my sh*t!) and haven't had any problems with them... I feel a bit fobbed off tbh.
I've just got to hope they plan on having a post op appointment with me so I can discuss it further, although I've not heard a thing since, not even the sick note they forgot to give me and promised to post out to me (don't even get me started on that one!)
What did surprise me was although the lap was done at a hospital that is a specialist centre, before the procedure the registrar said "if we find anything complicated that needs removing, we'll leave it for the specialist to do". Err, I thought the consultant I had WAS a specialist (paid privately for my first consultation with him).
Don't assume that the person poking inside you is a specialist!
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The shoulder pain subsided very quickly, so fingers crossed for you!
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