Impatiently waiting for laparoscopy results

[Smurphy91]

I'LL START FROM THE BEGINNING:

I'm 21 and I've been noticing the majority of my symptoms for the past year and a half. They include pelvic pain, hip pain, back pain, painful bowel movements, painful periods, heavy & clotted periods, nausea, fever, pain during and after sex, fatigue and depression. I started my periods quite early and I've always known them to be heavy and more painful than I thought was normal. It's been really difficult to complete the last year of university and it's also a big strain on my relationship (although my boyfriend is really understanding). I had been googling my symptoms before I went to the doctor and when I read Endometriosis, it just all sounded like it made sense. So first things first, I went to the GP and they did a physical exam (which was excruciatingly painful), took some swabs and also made me do a urine sample. The swabs all came back clear, so I was then sent for an ultrasound scan, which showed nothing. I went back to the GP and explained that I was still having pain. She gave me mefanamic acid tablets which did nothing, and since then I've been taking the pill back to back for about a year, which has stopped my periods. I was referred to the gynaecologist, who I saw on the 31st May. They tried to do another physical exam and again it was agony. They decided to put me on the waiting list for a diagnostic laparoscopy to try and find out what was causing me pelvic pain and pain during intercourse. They explained to me there and then that as it was only diagnostic, they wouldn't remove anything if they found it (which is annoying). I had the laparoscopy on 19th July and I'm pretty much fully recovered now, but I've had no information since. They didn't tell me anything there and then, and they didn't arrange a follow-up appointment, but they said I'd have a written summary through the mail, explaining whether they found anything or not and what the next step would be. It's been over 2 weeks now and I've still had no letter. It's driving me mad, every time the postman comes, I jump up to see what's come through the letterbox and then cry when it isn't my results. I understand that the consultants must be very busy but they must know what it's like not knowing what's happened. The worst part about the whole thing is feeling like it's all in my head, and knowing that people probably think there's nothing wrong with me and I'm making it up, for attention or something.

Anyway, I just wanted to share my story so far and get information from the rest of you ladies about your journeys and stuff. How long did it take you to get your lap results? Did you get a diagnosis after your first lap or did you need a few? How helpful were the doctors? etc etc

I'm new to the site so helloooo everyone, pleased to meet you all

[gypsydarla]

Hi,

I know exactly what you're going through! I had my laparoscopy done on the 30th July and was told it was just for a look around and nothing would be done if they found endo (I too felt that was really stupid). I was promised the results before I left but wasn't and am now sat around waiting for the postman as they've refused to give me the results over the phone or email. It's been the worst part and knowing that you've been waiting for longer hasn't made me feel any better

So I'm no help to you sorry except to say I know how you're feeling and your fears must be normal cos it's just how I'm feeling. I'm pretty sure they wouldn't have sent us for a laparoscopy though if they weren't thinking endo was a good possibility.

Hope you get your letter tomorrow xx

[Smurphy91 in reply to gypsydarla]

Thank you dear! I'm really sorry to hear you're going through the same wait, it's the worst. Feels like a lifetime! I hope you get your results soon and I hope it's what you want to hear. In a way I want them to find something because I'd like an actual answer x

[gypsydarla in reply to Smurphy91]

Yes I'm the same - I want them to find endo so I have a definite answer and can finally prove to ppl that I've not been moaning about nothing. My consultant told me I have endo without needing to do a laparoscopy cos I have cyclic bleeding from my bowels but even now I'm thinking what if I imagined it! Or worse, what if I have it but they didn't find it! Am I in so much pain cos they were shoving all my insides about thrying to find it but came up with nothing! arghhh it's like mental torture

[Cloudyrain]

Call your GPs office every few days as they often send them results rather than sending them to you, and GPs often don't realise you haven't be advised so just file the letters in their record.

Good luck x

[Smurphy91 in reply to Cloudyrain]

I wasn't aware of this at all so thank you very much! x

[BecciBritt]

Did you have discharge papers from hospital? I've had 2 laps and findings were usually put on there even if they sometimes may not tell you what they mean x

[Smurphy91 in reply to BecciBritt]

I did yeah, but they just said 'written summary to follow'

[Smurphy91]

Ok so I rang my GP and they had received a letter from the hospital saying 'no endometriosis was found'. I feel lost and empty.

[gypsydarla in reply to Smurphy91]

I too rang my GP and they had also had my results which said no endo found or any reason for my pain. I feel like I'm back to square one and now won't be believed at all in the future. It's an awful feeling isn't it

[Smurphy91 in reply to gypsydarla]

Aw hun, looks like we're in the same boat be strong x

[Infertile_endo]

i'm sorry to hear that, maybe make an appointment with your gp to discuss further options?

[Smurphy91 in reply to Infertile_endo]

Yeah I think that's the next step

[Catness]

Sorry to hear you have been having such an awful time. If I were you I would go to a private gynecologist. My symptoms were very similar to you and I bit the bullet and paid to go private and had a lap on 10th July. They also diagnosed a bladder problem which I thought was unrelated. Unfortunately in my experience the NHS just doesn't do very well with complicated gynecological symptoms and it may be time to see a specialist. I found mine by googling specialists by symptoms and mine is in Birmingham. It is expensive but if you can, so worth it just for the piece of mind. I really hope it gets better for you!

[Smurphy91 in reply to Catness]

Hmmm, I know private is always better but I can't really afford it the lead consultant that was overseeing the surgery was supposed to be really interested in endo so presumably they'd have been able to notice it. Ah well

[aliesha1228]

Hi Smurphy91,

I have just gone through a similar thing on Monday and am currently in the same situation with no news. The consultant did come around and tell me he found no endo but possibly some IBS due to something he found in the bowel... considering I have about 8 endo symptoms and no IBS symptoms I now feel like a total hypochondriac as all these years of complaining and pushing for a diagnosis have come to this. I was wondering if you were any further forward at all?

Thanks

A

[aliesha1228]

Hi Smurphy91,

I have just gone through a similar thing on Monday and am currently in the same situation with no news. The consultant did come around and tell me he found no endo but possibly some IBS due to something he found in the bowel... considering I have about 8 endo symptoms and no IBS symptoms I now feel like a total hypochondriac as all these years of complaining and pushing for a diagnosis have come to this. I was wondering if you were any further forward at all?

Thanks

A

[dfletch]

Hi smurfy,

I had a lap yesterday after having all the same symptoms and pre treatment you have had. I'm frustrated to say that they found no endo either and I feel like a total fraud, I have to keep reminding myself that the pain is not in my head and I've not put myself through general anaesthetic for no reason. I wondered if you have been able to get any further with your diagnosis and treatment and if you had any advice on how to go about getting to the next step?

thanks in advance X

[Nick15]

I am 44 suffered from pain like you guys . I had the nova sure done 2 years ago , I do not have periods any more , but I still get the pain constantly, sharp , stabbing , in lower right side , pain when having sex, stomach bloats sometimes I look six months pregnant, after many visits to the g p and gyni ,I feel no one believes me , I paid private last week because I thought I'd get answers but I'm still no wiser , they have told me to go back to the nhs for a lap , but I feel the same as the other lady what happens if this is a waste of time and they find nothing ,