Lap showed no endo - second opinion?

[staceymacg]

Hi all, I'm new to this forum but I'm hoping there are some similar people on here.

I had my first laparoscopy as gynae and GP suspected endo but after 2 hours searching my pelvis, it came back clear. I was incredibly disheartened and disappointed because I've been suffering for so long with every endo symptom there is and I just can't accept no for an answer.

When my periods started back in 2011, they were always incredibly heavy and painful and I frequently visited the doctors for pain in my lower right abdomen but was just passed off as period cramps. In 2012 I started on the pill microgynon to try and control my periods and it did work. They were lighter and less painful but I still suffered but, I thought this was normal. Then in Feb 2015, I came off the pill and onto the implant as I was in a stable relationship I wanted something more permanent. Everything was fine, my periods totally stopped until August 2015 when I started to feel incredibly unwell. I was nauseous constantly, incredibly fatigued, bleeding randomly and heavily and my main concern was unbearable pain in my lower right abdomen.

As of this year sex has became painful and I bleed 9 times out of 10. I've also started having bowed and bladder issues. I constantly suffer from UTI's which always show blood. Bowel movements are painful and often leave me in tears.

I've been passed from doctor to doctor and I fought to hard to fight my case and to get that laparoscopy and for it to come back as nothing I just cant accept that.

I'm going back to my GP on Friday to ask to be referred to an endo specialist.

I can't go on living on painkillers. I've been on strong painkillers for years and for the past 2 months I've been on morphine daily. Something is very wrong to be causing me this much agony.

This was just a place to rant and to see if anyone has been in a similar situation?

Has anyone had a laparoscopy that has missed endo?

Has anyone managed to see an endo specialist? If so, how long did it take?

Stay strong ladies!!💛

[AleissW93]

Hi! I'm so sorry you've had to go through this! I've had an almost identical experience, and unfortunately, 8 years on I'm still no closer to a firm diagnosis. When I was 16 I had a lap for suspected endo, but came back clear. Tried every pill going and the coil which worked for a year but then I got a severe womb infection and kidney infection from it and was in hospital for a week, the gynae said i've not to have any internal contra again due to all the scarring etc this one had caused.

I went for my appointment on tuesday to look at next steps. My ultrasound revealed pelvic congestion syndrome and suggestive polycystic ovaries, but he also thinks it may be endo cysts as I have several cysts on both ovaries.

I'm sick of living off painkillers, and frankly, giving up hope as being in terrible pain every day is my norm. Like you said, this type of pain isn't normal, and we shouldn't have to put up with it, especially with so many drs etc making us feel invalid.

Now they're looking at inducing a temp menopause with zoladex, and another lap. All the gynaes I've seen are endo specialists, but for some reason the male ones all seem to be condescending gits, who think that you're exaggerating the pain, where as the women seem to be extremely understanding and listen to you.

Always here for a chat or a rant if you need! I hope your recovery is going well at least!

[staceymacg in reply to AleissW93]

I'm glad I'm not alone in this!!

I'm just exhausted of feeling like the only one in my corner.

I really hope this app with my GP on Friday goes well and he refers me to a specialist but from what I've heard it could be a long wait!!

My recover is okay, very sore with the post-op pain as well as my regular pain!

I hope you get some answers soon! Xx

[AleissW93 in reply to staceymacg]

No it seems unfortunately a lot of women are in the same boat. I didn't realise this until finding this site. I'm thankful because I have been slowly losing hope.

It can be a while, I waited 3 months for this gynae appointment and came out of it in tears purely for his manner and how he made me feel.

If you need a chat, I'll be here, even it its just to vent. I hope you get some answers on friday, you can always ask for a second opinion from a different gynae, you only need to ask your gp.

Like me, you got referred back to gp because they probably think it isn't gynae related. Don't give up fighting for it. You deserve help and treatment xx

[staceymacg]

That's awful that your app went so terribly to make you feel like that. I know the feeling all too well!

Thankyou, same goes for you!

Yep, not even a follow up app with gynae! Xx

[dawntildusk]

Hi. If you read my original posts i was in a similar situation to you. If you are still having problems then u really need to push either your gp or consultant for further tests as your problems have of course persisted as nothing has been done. I ended up having an mri after my failed lap which confirmed everything that general gynae had missed. im sorry to hear that u are in this position. i really do feel for u x

[staceymacg in reply to dawntildusk]

I'll go read them now!! I'm back at my GP on Friday and my fiancé is coming in for some support as I tend to under exaggerate so he will help me push to see a specialist! I'm fed up of being 20 years old living like an 80 year old! Xx

[dawntildusk in reply to staceymacg]

my partner or mum always comes with me and i find i am taken more seriously then x

[DaisyThoughts]

So sorry to hear of your experience. Sadly, any diagnosis can often be a slow process. The first gynae I was sent to discharged me saying there was nothing wrong with me!! I was sceptical. A few months later I requested a second opinion and stage 4 endo was eventually diagnosed. Only you know how your body feels. Trust your own judgement when you feel something is not right and keep pursuing. Hang in there. x

[staceymacg in reply to DaisyThoughts]

Thankyou! It has been a slow process, 7 years so far and it's exhausting. I just need to keep pushing I guess x

[Char11]

Hi Stacey, you are incredibly strong! I'm 22 and know how frustrating and slow the system is. The way I've been spoken to by doctors when I'm crying to them about my symptoms is unbelievable. I also rely on painkillers to allow me to function so I know exactly how you feel. You could ask to be referred to a chronic pain team or women's health physio if you're not getting anywhere through gynae. Best of luck on friday and be persistent xx

[staceymacg in reply to Char11]

Thankyou so much. It's awful how many women suffer like this. Its more about getting a diagnosis for me, I don't want to just manage my pain without knowing the cause thankyou, I will be persistent! Xx

[kds16]

Hi Stacey, sorry to hear what you are going through. i am also waiting for my first laparascopy and your post is one of the things I fear most about happening but keep pushing the doctors, you know your own body and shouldn't be fobbed off. I have had people trying to tell me my pain is muscular and one day I will wake up with no pain, i wish that would be the case but nothing about this kind of pain feels right.

Good luck x

[staceymacg in reply to kds16]

Hi! It was one of the things I feared the most and I was devastated it happened. Exactly, I'm so fed up of people trying to tell me it's all in my head or it's just period pains. I know something is wrong! Xx

[Ardenrose]

Hi Stacey, I definitely think it is worth pushing for a second opinion with an endo specialist considering your symptoms.

I would suggest doing if your own research before going back to the GP. There are BSGE centres in the country you can look into and on Facebook groups like EndoMetropolis and Nancy's Nook you can access lists of surgeons who regularly deal with endometriosis and have expertise in excision surgery (check out the files section in each).

I hope you get some answers soon. All the best x

[staceymacg in reply to Ardenrose]

Yeah I've just looked and there is a centre in Edinburgh! I'm going to suggest this to my doctor x

[Ardenrose in reply to staceymacg]

That's good, I hope they are able to help. You can always post on the groups to ask for people's experiences who have been to that centre as well if that's useful. I did that and found it reassuring. There's also lots of suggested questions you can take in with you to your appointment which I found really helpful.

[staceymacg in reply to Ardenrose]

Yeah I will do! Thankyou x

[Ardenrose in reply to staceymacg]

No problem. Good luck! X

[Wishes_]

Hiya, I was in the same position as you. Had my lap at the beginning of May and nothing was found and was told my pelvic area was in perfect working order . I was totally disheartened by the findings but was also relieved it wasn't endo. I was in post op pain for around 3 weeks after my lap then my usual left side abdominal pain disappeared and hasn't returned! Not sure whether the op has helped release something or what's going on but this is the best I've felt in 2 years. My surgeon is an endo specialist and operates in two private hospitals so felt I never needed a second opinion. Just wanted to share my story as a glimmer of hope. Not sure how long I'll be pain free but I'm making the most of it. Good luck x

[staceymacg in reply to Wishes_]

Thankyou. I wish my pain had gone but I can clearly distinguish between my post-op pain and my usual pain as it's gotten worse! Definitely need a second opinion xx