To ask whether I should get a laparoscopy?

[Orangepineapple]

Bit of background - I am 27 and have been with DP 3 years. No kids. Been sexually active since 16.
Over the past year sex with DP has ranged from uncomfortable to too unbearably painful to continue. It's never just 'normal' IYSWIM but sometimes it's a lot worse than others.

I have been to various doctors about this and have been fobbed off (mainly with 'it's definitely recurrent thrush' despite having no other thrush symptoms) but finally my GP having done a swab test to show that I do not have thrush referred me to a consultant. I have had an ovary scan which was clear.

The consultant said today that she wasn't sure what's wrong with me but the next step would be to get a laparoscopy to see if it was endometriosis. However she stressed that this was an invasive procedure and it may not be that and even if it was endometriosis there wouldn't be that much she could do to help. My only other option than that would be to be discharged and they could not help me any further with the painful sex issue.

Other general gyno problems I have had over the years:
-from the ages of 13-14 I had the most horrendous periods you could ever imagine. Lasted weeks on end, agonising pain, would bleed so much it would soak through a towel onto my school trousers (sorry). I was put on the pill at 14 and have stayed on it ever since so don't know anymore what my 'true' period would be like. On the pill my periods have always been fine.

• I have had an abnormal smear test which turned out to be CIN1 but I recently had another colposcopy which turned out normal.

I don't want children for another 2-3 years but I definitely definitely do want them in my life.

The consultant wouldn't be pushed on whether she recommended me to get the laparoscopy or not and said it was only my decision but to bear in mind it is very invasive and there wouldn't be much they could do either way.

What would you advise? Do you think it sounds like I could have endo or is it too remote a possibility to be worth the laparoscopy? Would being diagnosed with endometriosis actually make a difference or not if they can't treat it anyway? Is the laparoscopy that bad? Would I be at an advantage to know about any possible fertility problems now, before I'm ready for kids, rather than a couple of years down the line?

I'm really lost so thanks so much in advance for any replies I receive.

The terrible periods and very painful sex could well be endo. A lap is the only way to diagnose and is not too invasive in and of itself (ie if it is just a diagnostic one you will be out of hospital the same day and on your feet quickly).
Having a diagnosis should make it easier to get better gynae support. A diagnosis often means that your symptoms are more likely to be taken seriously. Managing the pain properly is a bit step which can come from this. Ultimately, there is no silver bullet treatment. Hormones (the pill) can slow things down. If that doesn't work, then further laps to remove endo tissue is the final line of treatment - often this gives people a lot of relief from pain for many years. Sometimes, it gives short-term relief and has to be repeated regularly to keep the endo at bay while adding its own problems due to scar tissue and adhesion. But either way, it will not happen if you do not have the diagnostic lap.

I have severe recurring endometriosis (6 operations in 6 years). I'd say go ahead.

I had a diagnostic lap at the beginning and it was fine - I was out for less than an hour and woke up to the surgeon telling me "you're riddled with it - far too much for me to deal with, you need to see a specialist". I was back to normal the following day because I only had two small incisions and no tissue removed.

My first operation was v extensive (not laporoscopic) - 7 hours, 3 weeks in hospital - but they removed all the tissue and it made a huge difference to my quality of life. So it's not true that they can't do anything re endometriosis.

My last operation (2012) was also a laparoscopy (to remove three grapefruit-sized cysts). I was out for about an hour, home a couple of hours after that and back to normal activities two days later. I went from being unable to stand up straight / extreme tiredness to blissful relief. The scars on my abdomen took a few more days to heal but there was no real pain. I still have scars but they're small (the size of the pink bit on my fingernail) and I forget about them most of the time.

Since then I've had a few fibroids but nothing that requires surgery. Maybe because my hormones are changing as I get older (40s).

Based on my own experience and on listening to my consultant, the longer you wait, the worse the endo will be - if that's what it is. Once you've had it and they've had a look inside, they can advise on how extensive it was and where it was. And if it's not endo, it's probably best you start looking at other possibilities and get it sorted before you ttc.

Good luck!

Have the lap. And there are some brilliant endo support groups on fb and other places. If nothing else it's just a massive relief to know.

Should have added - from my symptoms I think I had endo for about 13 years before it was diagnosed and operated on. And that's probably why my first op was so extensive - there was a lot of rogue tissue to remove!

Thank you so much for your replies.

The more I read about this the more I think I may have had it since puberty with the pill masking my symptoms and it seems many women take years and years to get a diagnosis.

I was worried about going through general anaesthetic surgery (which I've never had before), pain and time off work for it to turn out for there to be nothing wrong and it 'all in my head' but I think I need to put my health first and go for it.

Was your consultant gynaecologist a specialist in endometriosis?

Not all gynae consultants are equal & it doesnt sound like yours is even interested in finding out what is wrong with you & why you cant have sex without pain.

Having the laparoscopy will either diagnose endometriosis or rule it out, it will also allow for a look around so to speak to see if anything else is causing problems.

If it is endometriosis there are different treatments that they can try, they may do laser or diathermy during the op, following surgery, they may put you on hormonal treatment inc putting you through temporary menopause to "calm" the endometriosis down.
Early diagnosis & treatment can prevent worsening of symptoms which might impact ability to conceive. If it is endometriosis then having a confirmed diagnosis will also as already mentioned mean you are taken more seriously with your concerns. (sad but true)

Regardless, you are a 27 year old woman who has said that you no are no longer able to have sex without pain, this alone should be a reason for further investigations.

Link from the endometriosis uk webpage explaining what will happen with laparoscopy, risks , treatments during surgery, recovery etc.
www.endometriosis-uk.org/sites/default/files/files/Information/laparoscopic_surgery.pdf

Straycatblue - no idea if they were an endo specialist or not. I'd turned up at the appt expecting to be sent away with cream or something so this came totally out of the blue for me and was 100% suggested by her and not me.
It was only after she said it i considered whether the issue could potentially be linked to my teenage period issues. Because of that my fertility has always been in the back of my mind.
The consultant was very clear that if I didn't have the laparoscopy, there was nothing else they could do with me and I just had to learn to cope with it as it was probably psychological :/ I strongly don't feel it is psychological, my relationship is happy and I haven't been under a lot of stress in my life but who knows I guess.

I would have it.

I've had 2, the first one they did very little and the recovery was quick. Second one they had much more of a look around and removed a lot of endometriosis tissue on my bowel and I was very sore afterwards. But definitely, definitely worth doing!

I had endo and had simar symptoms. lap was used in my case to diagnose and treat it at the same time.

I had a 2h surgery and was back to work a week later. made such a difference pain wise and I had children 8 and 10 years after the lap (no issue conceiving).

I think you need to push for a gyne referral, preferably one who is experienced re endo.

A laparoscopy is not invasive. It's key hole. Ok, the doctors tried to fob me off in similar circumstances. The consultant rudely likened my pain to having a headache - 'painful, but I'd bet my house your CT scan would be normal'. Any way, they found endo and a clubbed ovary. Get it done. You will be in and out within a day.

I had a lap due to fertility issues. Like others have said it wasn't a massive deal. It was done as a day case. Just two little incisions that healed up quickly with barely a scar. Recovery was very quick. I would definitely have the lap in your position.

I would have the lap. I am in tje same predicament as you had the scan nothing ect. I am also 27. I donhabe children but have beem told although endo can afgwct fertility it doesnt always.
I will definately be having the lap. Just soni know what i am dealing with xx

Yes have the laparoscopy. Painful sex is a major symptom of endo. Mine was very painful with proper penetration and then the next day I would be doubled over in pain. We ended up having rubbish sex for ages.
Also I had debilitating periods.
NHS told me all women have painful periods and asked me if I was alternating paracetamol and nurofen

I got a referral through bupa and two weeks later had the laparoscopy plus a hysteroscopy and cystoscopy.

I had endometriosis all over everything. Everything. But it was superficial with no adhesions and the surgeon lasered it off while I was under.

I had 9 blissful pain free months and then the endo started coming back. Had a second lap after 18 months and again was pain free and then had IVF and a baby girl. The pregnancy and breastfeeding meant I had no periods for a year and a half. Then endo started to come back but I got pregnant again and am currently almost 6 months and of course pain free as I have no period.

If the pain and endo come back again after this baby I have absolutely no qualms in having another laparoscopy and excision or laser.

You do not have to live with endometriosis pain every month and every time you have sex. I feel quite cross on your behalf that a silly doctor told you nothing could be done. It is simply not true.

I'm another one who had the laparoscopy and discovered endometriosis EVERYWHERE. Life is dramatically different after having all of the adhesions zapped.

As far as surgeries go, it was a non-issue. I was feeling just fine a day or so later. I have a tiny knot of scar tissue in my navel, the other cuts you can't even see.

It's worth it to be pain-free.

Have the laparoscopy. I have endometriosis, the first symptom I went to the doctor about was pain during sex.
I had it lasered but pain came back within 2 months (consultant said it was most likely that I also have adenomyosis too). I was given hormones to make me menopausal for a year but they just masked it. I found a specialist through an event the endometriosis SHE trust ran and he excised it which gave me a couple of years pain free. When the pain came back, I controlled it through diet - dairy made the difference to me. I have a 2 year old now and my symptoms are reduced at the moment, most of the time.
Definitely make sure you get a gynaecologist who actually knows about endo, the treatment some people get is appalling. Also, be careful about what you Google. Endo is wide ranging in the severity and form of symptoms and I read a lot of people's awful stories straight after diagnosis and thought all these things would happen to me, they didn't.

I had one, they originally thought it was endometriosis and said they wouldn't do it as all they'd do was put me on the pill for it anyway, but then I moved and the new consultant was happy to do it. I didn't have endometriosis, they just concluded I had "crap hormones", but at least I knew.

Thanks guys. I think I'm decided on having it.
@summerkelly - as someone who had the lap and then found out that there was no endo, do you regret the time/pain of the procedure or was it still worth it?

Definitely worth it because I'd rather just know than wonder what's going on. It obviously wasn't an enjoyable experience and I was quite sore after. It was a while ago now so I can't remember how long it took me to recover but it wasn't ages and there were no lasting effects. I've always had a lot of random bleeding, though not so much after I had DD other than being on the mini pill, so knowing it was just my hormones has put my mind at rest for years really.

I had a lap and they found my ovary stuck (possible adhesion) but no endo. I had it at the same time as a hysteroscopy/polypectomy. It was still worth it to rule it out, and I wouldn't hesitate to have another if necessary. I was only out for an hour and recovery was about five days. :)

I would definitely have it. I had one after 3.5 years of heartbreaking unsuccessful TTC (started at age 27). Turned out I had a blocked fallopian tube and extensive endo. Two hours in surgery and I came out minus the damaged tube and lots of endo removed. It took me a good couple of weeks to recover, but then my insides had taken quite a battering.

If you're planning on TTC in the next ten years I would definitely have the laparoscopy - it might help you with the current pain, and the more info you have the better, for both fertility and pain management.