First lap, no Endo found?

[nicococacola]

Hey ladies so I'm really confused I had my lap on Tuesday, (I was only under for 15 minutes which doesn't seem long enough to me for a proper inspection!) but they said no Endo and left it as undiagonised pelvic pain. Now I don't know where to go from here and my GP never believed there was anything wrong with me anyway so he will most likely love hearing this news, but I'm not in all this pain for 3 years for nothing and the 3 gynos I saw said it really sounds like Endo as my symptoms are text book.

I don't know if I should go to my GP again? What do I say to him. I feel like I should give up because no-one believes me anyway. I have read a few things about adenomyosis but I don't know what it is and my GP will most likely brush it off.

I had the mirena fitted during the lap as she believed it could help the pain I was in however last night I was in A&E having it taken out as my uterus was rejecting it. I have been on the combined pill for 5 years and it doesn't help symptoms and I can't go back on it anyway because of aura migraines. I'm just so confused as to what to do, who to go to and what to say? I don't know what contraception to go on either.

Sorry for the ranting girls hope you're all doing well xxxx

[Lyz1224]

What a pain - I don't know if I can say much because I haven't yet been diagnosed and this is something I am also worried about when / if I ever get a lap.

I would go and see another doctor - possibly one with a specialist in Gyno. It's sad that GPs aren't helpful, I have been seeing 3 different doctors and 2 different nurses with the same symptoms for the past two years and none of them have even mentioned endo to me - it was only the radiographer when she couldn't find anything on my internal and external ultrasound that mentioned that endo wouldn't appear on the scan and I should maybe do some research into it.

I have decided to go to a different doctor who has a special interest in Gyno, I am hoping she is going to help.

I am also looking into going private, I am in contact with someone at Leeds who's charge for a 25 min consultation is £120 - this is expensive I know but if it helps me be diagnosed with whatever I have got then it will be worth it.

I hope you find out what is wrong - it's not normal to be in pain, whoever tells you it is...needs sacking!! (my GP told me that 'some women just have to live with irregular bleeding and pain'

I hope you find your answers xxxx

[Hidden]

It happened to me too. I got my first lap 5 years ago, they said they found nothing. The dr. offered me no follow up or anything to see what the problem could be. So, I left thinking it was me. I stopped moving and being active and gained 20+ pounds. About 3 years ago I was tired of being fat and started moving again. The pain came back with a vengeance with every pound I lost (I still had pain, it wasn't as severe as when I was skinnier). So, a year of birth control trials and then had another lap. Stage 3 endo. I wanted to go back to all my past Doctors and tell them they were stupid, and it wasn't all in my head.

[Kat090181 in reply to Hidden]

This has really given me hope. I had my first lap in April 16, which showed no endo, but adhesions in my lower abdomen, which they linked to a gastro problem, as mymy ovaries were clear except for a tiny cyst. Both my consultant and my GP strongly feel I have endo, as my symptoms are textbook, they just couldn't find it so I am unable to get a formal diagnosis. Everything I have read said a lap was the only way to diagnose, so I had given up on getting diagnosed, but your account has made me want to keep pushing.

xx

[Carakd92 in reply to Kat090181]

In my opinion the adhesions would signal endo. That’s basically what endo is... scar tissue. Just bc it wasn’t on your ovaries doesn’t mean it isn’t endo. Endo can grow just about anywhere. Your bowel, diaphragm, colon, pelvic wall, etc. it’s even been found on the lungs, heart, and brain. I would most deff get a second opinion about that if I were you.

[Kat090181 in reply to Carakd92]

Yes I am pushing for a second opinion. I've just had an mri as been in real agony in my pelvis and bottom. Gastro organised it but reluctantly as he feels gynae should be doing further tests. Really hoping it shows something! Thanks for replying x

[Mabes]

It's our worst nightmare I think. I'm waiting for the date for my first lap and I'm really concerned about it not showing up too. I'm so sorry you're going through this situation and I completely understand how confused you are about the next step.

I agree about finding a different specialist. Do you know if yours was just a general gynaecologist or an endometriosis specialist? I think if I find myself in this situation, I'd be wanting to see an endometriosis specialist to discuss it. I think you are entitled to a 2nd opinion on the NHS so perhaps you could push to get one at one of the specialist endo centres. Or if you have to and are able to do this privately then get a copy of your medical notes from the NHS to take with you.

In the meantime surely your GP should be discussing pain relief with you. It's not as if they have said there's nothing wrong, but instead that they don't know why. Can you see another GP? I generally find female doctors better with this recently, although in the past they were dismissive due to my age.

The consultant I saw made a big effort to point out to me that a lap won't necessarily show anything. He didn't say why... Whether because it's too early to see it or because it's something else or all in my mind or what. While I appreciate his honesty in preparing me for this possible scenario, I do find it worrying as does that mean he has a high incidence of doing laps and finding nothing iykwim. It's so confusing eh!?

[Kardin]

Recipes for the Endometriosis Diet by Carolyn Levett. This may change your life. It definitely changed mine. Just cut out things one at a time and see what's your worst. Good luck my friend XxX

Also get a new Dr. That one sounds like a patronizing arsehole.

[RTaylor92]

Hey - I had my first lap 23rd May last year - diagnosed endometriosis and burnt some away. Pains come back worse and had my 2nd lap on Thursday just gone, 22nd May this year. Same consultant/surgeon that did the op last time. I was under for about 30-45 mins this time whereas last time was 1.5 hours. I come round and he said he couldnt see any endo this time. Diagnosis is down as pelvic pain. Although he didnt take any pictures or look at all the places he did last time - so the dr said that was in surgery with my consultant. I will have a follow up app in 3-4 months time to give me time to recover from this lap, and monitor symptoms. They are DEFINITELY same symptoms that I have always had so I know im not going mad. The bit that confused me the most was in my report from the first lap he said he saw deep endo that possibly would need cutting away. This was left first time round as he only wanted to try burning the surface stuff first (which is fine) but this time he didnt report the deep endo. So im now wondernig if he didnt look for it, or didnt want to cut it away? Im completely baffled and no idea what next step is. It was such a relief getting my diagnosis last May and now after the incredible pain I have been in, to not have an answer this time is frustrating. Nurse that discharged me from hosp said maybe the endo wasnt spotted due to pains being where its starting to come back, or maybe there is another underlying pelvic problem as well as very minute endo which is hard to see since burning the surface endo away.... AHHHH!

[RTaylor92]

Im just going to add that come July, I will be able to go down the private route with ''Benenden Healthcare'' that I pay for each month. You have to be registered and paying for 6 months before theyll cover you for second opinions, tests, ops etc, but it CAN be new OR existing problems. I pay £8.19 a month and it gives me the reassurance that I have more options if no luck with NHS and first drs/consultants advice and diagnosis. Definitely worth looking into if you're in UK as they have various hospitals and drs all over the place. My closest is actually the Benenden hospital, but I will be using them for endo and an ongoing undiagnosed heart issue too come July. x

[Hidden]

This happened to me too - again text book symptoms. I also had mirena fitted and that did help the pain at first. I didn't really have proper periods for the first 2-3 months. Gradually though my periods returned along with the pain, each period more painful than the last until I'm back where I started. Except I have more frequent periods that now last a fortnight so in fact it's worse.

I also have prolapse problems and so asked a GP to refer me again - but this time to a different gynaecologist as I felt the other one just ticked boxes rather than treated people. She said she couldn't pick a gynae but could send me to a different hospital. Oh, I was so very lucky. This new gynae is marvellous and very highly regarded. He specialises in minimally invasive treatments for menstrual disorders. Painful and heavy periods. He also, to my joy and relief, specialises in complex pelvic repair! He said he wouldn't have fitted mirena. He said that painful periods aren't always caused by endo. He wants to try endometrial ablation as that can help painful periods due to endo or not. I'm going back in June to let him know what I've decided, which is yes to the ablation along with getting rid of mirena and an op for the prolapse problems.

From people on this forum I've learned that endo can be missed so that is something to consider. My view is that you need to see another gynae really. That way you can discuss the likelihood of it being missed, the ablation option I was offered or even just better pain relief options. There may be other things as well but I only know what I've personally been told by this new gynae.

The best of luck.

Deb

x

[nicococacola]

Thanks for all the replies ladies I really appreciate the advice and the support.

My gyno was not an Endo specialist, she was female but definitely not sympathetic lol.

All the drs in hospital where congratulating me that I didn't have Endo and to be honest I wanted to right hook them. I didn't want them to say that and I wanted to know what's wrong.

I've got an appointment with my GP next week and I'm taking my Fiancé as he's good for when I burst into tears and don't know what to say. If he doesn't help I think it's time to change doctors.

Thanks again ladies and I hope you're all doing well xxxxx

[sanchia46]

Try the progesterone only pill cerezette

[MrsNGoo]

I’m pretty sure not 100% but still pretty sure that even with a lap there is a chance of not being able to see endometriosis as it can form outside the uterus and in other places. This could explain why they havnt found anything. Don’t give up, go through another Gp if yours is useless. And don’t stop until u get results u want. I hope u don’t have endometriosis but u must have something that needs sorting.