I had my first 'diagnostic laparoscopy' today 13th Aug and as stated in my previous post I was worried they wouldn't find anything because of being on the Prostap injection for 6 months and not having a flare up since November 2020 and period since May 2021. Now, I say period but it wasn't a true period like I would usually get. Sorry for TMI. 🙈 My flare ups come a week before my period, always as I keep a log of it all as asked by my gynae.
I had a completely different gynae doing the surgery to the one who has had me from the beginning.
So they found nothing from this Lap, I am completely heartbroken, as much as that is good news, it is bad news for me as I feel like I'm back to square 1 again. ☹ I'd waited nearly 18 months for this and have been in agony for about 5 year (that has been chronic pain).
I'm after some advice if possible please, has anyone had a similar situation to this? What did you do next? I feel like it's a kick to the gut. ☹
Thank you.
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Emily_Rose97
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Hey lovely I’m so sorry to hear you’re struggling after your lap. I just wanted to reach out because I had my first lap exactly a year ago and the same happened with me, in that they told me no endo found despite all my symptoms and a family history. You say a different gynae did your surgery, do you know if they were a general gynae rather than an endo specialist? Xx
Dartmouth93 thank you lovely, I'm so sorry to hear the same happened to you too ☹ it is heart breaking isn't it. That's exactly what was said to me - the gynae asked if I had bowel movements in the morning before surgery (I said yes) she asked if it was normal - if I'm being honest I don't know what normal is but I know for definite my movements are never normal. She said after I'd woken up 'no endometriosis was found but your bowel was quite full, maybe that's causing you the pain' but I know it isn't that. ☹It just says on the discharge notes she was a specialist in gynaecology so I presume not. I think my next step is going to be see what my original gynae says and maybe find an endo specialist of my own or see if she can recommend anyone.
Thank you very much! There doesn't seem to be many endo specialists by me (I live in Shrewsbury, Shropshire). I didn't even know where to start so thank you for the recommendation 😊
Luna20 Hi, no I haven't. I had been waiting about 18 months to have this Op and if I'm honest I was lucky to get that. My gynae hasn't really been a great help and I feel like I've had to sort everything myself and push the doctors and others to get me to where I am ☹ I feel brushed under the mat but hoping this will push for more tests etc. Thank you for your recommendation, I'll be sure to look into it. 😊 x
It is my daughter who has endo. She had a lap that found stage 1 which they removed. She has no more abdominal pain but her pelvic floor muscles are in bad condition. They were so tense due to the endo pain and she has been seeing a pelvic pain physio (privately - I paid for it, the NHS pelvic pain team was no help) and that has really helped.
Oh, yes, and my daughter is also seeing an acupuncturist. Her tense pelvic floor has impacted on the pelvic nerves causing shooting pains. The physio is helping improve the condition of her pelvic floor and the acupuncture really helps with the nerve pain.
Sorry to hear you’re in so much pain and they didn’t find anything. I experienced a similar situation and it’s just a dreadful feeling.
Do you have adenomyosis? I’ve been told I was endometriosis-free in the past and this can be delivered as good news. It IS on paper, but it’s not always a pain-free outcome and this is heartbreaking after the waiting and chasing up and expectations.
Adenomyosis, scarring, fibroids, nerve pain…all these things could be causing you pain. If you can, ask to see the results and get a second opinion. If you’re not with a specialist endometriosis centre like UCLH, ask for a referral to one. It may mean a lot of calls, chasing things up, being pushy, maybe even waiting for another procedure…but hang in there!
In the meantime, can you be referred to a pain team? They can help with various methods of pain management including therapy, medication and specific exercises.
I know how awful you must be feeling and it’s ok to feel that way. I hope you can get more answers soon and find some pain relief. Wishing you all the best.
AlexMoomin thank you for such a lovely response! 😊 the surgeon wasn't overly helpful of I'm being honest she just said no endo found so I feel like I haven't really got much of an explanation really. ☹ I'm lucky my mother in law works for the NHS and knows a lot of people so I think she is going to try and get something sorted for me or see if she can find out any recommendations which is useful. 😊
Thank you for the recommendation, I will certainly look into this - as I can't live like this it is ruining my life.
Mylovepari1 the last time I spoke to my gynae before my lap was July 2020. So over a year I waited for my laparoscopy. Covid has made a lot of appointments delayed and also has created very long waiting lists.
Thank you for your reply.actually from last July 2020 I am having treatment of anal pain.from last year they were checking only my anal as have I always complained about anal pain and nobody even thought of sending me to gynecologist not even it comes in my mind to ask gp for gynecologist visit.from last one year I can't walk n sit properly but on last day of my daughter's school last month I fainted on the road thank God there were some people walking so they helped me on that day they told me to ask gp for gynecologist appointment maybe I have all these problems linked not in anal but somewhere else so I asked my gp for gynecologist appointment to check why I am struggling from last one year and no painkillers are helping me .so I got my appointment last week.so after one year of pain and suffering I come to know that there was nothing in anal but I have got endometriosis which were causing all these troubles so if I have to wait one more year I don't know how I will manage my life as I already suffered a lot.sorry I wrote everything but I feel sorry for me and my family sometimes.
Mylovepari1 that sounds terrible. Sorry you had to suffer for so long. I'm not sure if you'll have to wait another year for treatment, the NHS are trying to get through all of their waiting lists quick but covid isn't helping the situation. I think I probably would have been seen sooner but because covid came quickly after my appointment, everything got stopped. I have my fingers crossed for you. 😊
Sorry can’t offer much advice as I am pretty much in the same boat.
I had a diagnostic lap March 20 the person did surgery, said it’s not endo .. no evidence. I totally understand where you coming from about being heartbroken, I was too
My gynae consultants have been Simone different every time I have had a consult. Not ideal.
When I had my delayed follow up over a year later. That consultant was back to saying it could be and sound like endo
I have now just completed 6 months decapeptyl… and again not really sure what the plan is. I feel it’s just a waiting game for my period and pain etc to come back
I am so sorry I couldn’t be any help to you. I hope it helps a little to know someone is going through the same thing.
Happy to chat or message anytime. I know how lonely this can all feel
Abz81 thank you for your lovely words. I'm sorry you too have had to go through this, it is a horrible experience isn't it. I really hope both you and I get the answers we desperately deserve.
Thank you so much, my messages are always open too if you ever wanted a chat 😊 take care x
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