Lap found no endo - feel like everyone thinks I've made it up

[Cat_face]

Not that I want endo but I wanted an answer to these symptoms: bleeding after/ during sex, agonising left abdo pain (tugging, twisting) which is worse during ovulation and menstruation.

This has been going on for years and I've had ultrasounds, hysteroscopy (which was the worst pain I've had in my life) and now a lap, all clear.

I feel devastated. The surgeon has discharged me from gynae and reckons its a gastro problem which made me burst into tears. If it was gastro why would I bleed during sex (and by bleed I mean flood) and have agonising, stabbing pain in the same place?!

I feel like I've had the lap for no reason at all. It didn't just waste my time, but my partners and my mums as they looked after me this week.

The only other thing I can think of is that I've had diathermy on my cervix for pre cancerous cells and my cervix is very scarred. Although I know scar tissue won't hurt itself, could it be adhered to healthy tissue and pull when I have sex? I understand there are cervical changes during menstrual cycle - could this be the cause of my problem? I can't even bloody ask anyone cos I've been discharged! Arrrrggghhh!

Sorry, just needed to vent. Feel so down.

On the other side when can I expect the bleeding to stop post lap and can I use tampons? Also, when can I resume sexy time?

Thanks girls xx

[Catness]

Hiya

I'm no expert but I would have thought that if any scar tissue had formed or tethered anything they would have seen it during the laparoscopy :/ I could be wrong though so hopefully some of the other ladies will reply and tell you more.

Sexy time wise the advice can vary from person to person from anything between 2 weeks to 6 weeks. I waited 5 as I had a lot done during surgery... I would also wait to use tampons a couple of weeks personally but again maybe someone else can shed some light on that.

I'm sorry you have had such a bad time and I hope you get some answers soon. It might be worth considering going to a private gynaecologist because the difference is phenomenal and they would be a lot more proactive in finding on what is wrong. I have the name of one in Birmingham if that is any good.

I hope you feel better soon! xxx

[Impatient]

scar tissue or adhesions inside on the cervix and also the inner surface of the vagina certainly can tear and bleed during sex , however if you're having sex and it triggers a period type flood then you need to be checked inside the uterus. A lap will only check what is going on on the outside surfaces.

Painful sex and Bleeding with sex is not something there is a cure for when it is caused by adhesions. Any surgery will only be a temporary fix and will encourage more adhesions.

As for the surgery being a waste of time..that is not true.

It has ruled out endo, it has ruled out ovarian cysts or anthing obviously wrong on the outer surfaces, which basically cuts out a huge number of possibilities.

Next step is to check for adenomyosis (within the muscle walls) not visible during surgery usually but might show up with a MRI scan.

Your surgeon cannot do any more for you himself, but that doesn't stop you going back to your GP and getting referred to a different surgeon or having different tests.

Chances are that it is a simple enough issue of scar tissue and nothing more serious than that which from your health point of view is great news. However it does and will impact on what you decide to do regards penetrative sex.

You can prevent the bleeds and pain by not having sex. That does not mean giving up intimacy, but you should look to finding other ways to enjoy your intimate time together without having penetrative sex in the usual place.

Or decide to have sex only when you are on a period anyway, so the bleeding and pain is being dealt with at the same time as the period's bleeding and pain issues.

To stop the pains of ovulation and periods then obviously the answer is to stop your periods. Either by taking BC pills back to back, or mirena coil or norethisterone etc.

Lots of different things to try there and if one sort doesn't suit you then switch and try something else. At least with you not having any visible signs of endo, your choice of BC Pills is increased.

Ovulation pain is common, and many ladies who don't have endo also do have ovulation pains. They tend to become more noticeable as you age.

I always did have very strong ovulation pains, alternating sides, and some months both sides. However since i have had the mirena in, and it stopped my periods pretty much (aside from occasional ones usually light spotting episodes or when i have done some physical exertion, ) i can't say that i have noticed any sharp ovulation pain at all. I do only have the one ovary left.

So that might be an option for next surgery. If the pain is always severe on one side mainly then have that ovary taken out. You can manage on just the one without any troubles.

Definitely don't rule out the gastric option... periods can cause bloating, bloating can put pressure on the intestines and disrupt bowel movements. Again this could be something that stopping your periods from occuring might help.

So too may altering your diet so you can trial and error certain food groups in the week before you are due on. Keep a diary of what you have eaten and what effect it is having in the following couple of days afterwards.

Still lots to be done that you can do for yourself, as well as speaking to your GP about the latest results and deciding between you where you want to head next in terms of improving your quality of life.

[islakittycat]

Hiya I know it feels like a never ending nightmare with no diagnosis. I have experienced a similar situation when I was 22 in 2002 I had my first lap nothing was found so they said. Then I had another at 25 in 2005 nothing was found but some scar tissue. I really thought I was going bonkers. I was taking the combined pill tried back to back. I had a referral to gastro consultant they said gyne. Then I had another lap in 2005 at 25, nothing was found but some scar tissue which was advised from an infection. I was dishearted I felt like I was making it up. I tried all different pills yasmin was the better one. Then in 2009 at 29 had emergency surgery for ovarian functional cysts my ovaries were saved on holiday in Majorca. All this time no sign of endo suffering in pain ovulation and period pain etc. Finally in 2012 at 32 lap by an experienced consultant nhs paid private so only consultant did lap he diagnosed endo where the scar tissue was in 2005. Notsure if previous laps were done by registrars in 2002 and 2005 and not experienced the consultants in charge of care just said get on with. I am now awaiting excision surgery by endo specialist consultant at 33 with severe pain, fertility now in question. Personally I would as much research as you can looking at tour symptoms online and treatments etc. i am notsure whether your taking the combined pill or having hormone. Contraception I feel this may have caused me not to be diagnosed. If you can I was take the combined pill 3 months together then break this helps a lot of gyne problems. i unfortunately had to stop taking it cause of migraines then I tried the mirena coil that only worked for a year trying everything and researching I asked to see another consultant. keep going you know your own body if its not right something is wrong you just got to workout out what and get and experienced specialist consultant. I wish you all the best and hope you get a diagnosis of whats going on. I knew I had endo from all the research back in 2002 but my body only had very basic signs that werent seen only a endo specialist consultant can really confirm whether you have endo and provide correct treatments. There is specialist endo clinics on the nhs. take care sorry its so long would love to prevent anyone going what I have xxxx

[dinogirl2008]

Hi Cat_face, I was in exactly the same place as you many years ago. Had numerous investigations, to be told it was one thing then another. I gave up, then met a new consultant, she was great. Got to the route of my problems and put me Zoladex. I never looked back. I have had 16 years of peace.

hope this helps.

[wp22]

Would you not consider going to a so call 'specialist' centre for a second lap/diagnosis. Definately sounds like endo symptom to me, sorry. But it is always an option. It needs sorting x

[malred8]

Hi

I have very similar symptoms as yourself, ESP the left sided pain on ovulation time and period. Periods extremely heavy, lots of very large clots. Had pain after sex but not bleeding. Was told by a private gynaecologist I had thickening on my ligaments, however when he left went bk to nhs who found nothing on my lap. Not sure if it was because I am on a Gnrh drug so it's strunk. I do feel really bad like a fraud cos they found nothing. Was going to have nova sure at same time to stop or ease my periods as I was flooding. They couldn't do it so I am going bk for a diff type of endometrial ablation on 7th Oct. so hoping that this will ease my symptoms. As have no pain whilst on the Gnrh drugs. As for sexy time I had only the diagnostic lap nothing done and a hystercopy so biopsy taken. We had our sexy 6 days after my lap was painful. Few days later we tried again and it was ok ish. Good luck, however you get on I know exactly how u feel don't want to have endo but when the dr is convinced and you put everyone out and have to have time off work you feel totally fed up. Just want to know why!! I too had a 6cm cyst. That just went apparently!!

[worth71]

try not to focus on the lack of diagnosis for now, just concentrate on getting better after your lap, and remember its not just about physical recovery, but emotional recovery too, which for me the emotional side took much longer, i was diagnosed with stage 4 endo but i was petrified that i'd come round and they'd found nothing, but just because they haven't found endo doesn't mean its not there, it just means they may not have seen it, thats the problem with this condition, there is no cut and dried absolute with it. i had the same even with my diagnosis, my diagnosis was stage 4 with endo pretty much everywhere, my ovaries have stuck to my bowel, bowel to womb, womb to bladder, and i suffered each and everyday with pain, but i still kept being told, repeatedly by friends and family 'oh my friend etc had endo and they had loads but didnt get no pain!' i gave up trying to say that amount of endo doesn't relate to pain, and that you can have loads and not know it, and have a pin prick amount and be in excruciating pain, they all seen it as you have endo so everybody's symptoms should be the same, and then because i had been advised to have a full hysterectomy all i kept being told was to get on and have it done, 'cos so and so down the road had theirs done and they're fine' arrrrrggghh, i don't care about so and so down the road lol, i wont be rushed into a decision, and so far i have managed my symptoms by diet and exercise and am doing ok on the whole, i still have bad days, but it has reversed the good days far outweigh the bad, and mainly I've cut out wheat type stuff, bread and cereals, caffeine and chocolate.

but anyway, as much as i can appreciate you're feeling how you are, don't! there are many posts on here where ladies have said they have had multiple laps and not been diagnosed first or second time, you know your own body, and when your well again keep pushing the issues with your gp.

i cannot really comment about tampons as i had an ablation done at the same time and was not allowed to wear them for six weeks and the fact i bled heavily for 8 weeks constant meant i wasn't really in the mood for sexy time lol - good luck, hope you recover quickly and push for what you need, you have pain issues which you shouldn't xx

[Worzel]

Hi, i've just had a lap last Saturday. I know I have endo as I had a lump removed from my abdo wall back in March, however all my symptoms didn't go away, in fact they got much worse. I have bad hip pain, sacral pain, legs/thighs are dreadful, sharp stabbing pains in abdomen on both sides, bloated, discomfort when passing water and an urgency to go as well as painful sex and bleeding afterwards. I was devastated when I woke up from my lap to be told they'd 'freed' a couple of adhesions but found no active endo. The nurse and my husband couldn't understand why I burst into tears as they said I should be relieved it was nothing serious. However I know how i've been feeling and it has been horrible. Anyway when the consultant came round to see me he told me he thinks I have adenomyosis and that he wants to see me in a fortnight to discuss options. Since being home i've looked into this and it fits with all the symptoms i've been having. Is this something that could be a possibility for you? My surgeon was an endo specialist so perhaps that is why he was able to see and diagnose the adeno? Good luck and don't get too down. Only you know what you've been feeling so keep going until they find what it is that is obviously causing all your problems. Take care, x

[CaraBoo]

I don't have any constructive advice but having read the symptoms of adenomyosis, they really match my own.

Hope you get answers soon.