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Laporoscopy to investigage for endometriosis: what's it like? Dithering.

(25 Posts)
openerofjars Fri 01-Apr-11 22:53:18

I have been having abdominal pain for a couple of years and ultrasound scans have not found anything. It is not getting worse or better. I had a chemical pregnancy last month and was fairly pain-free up to my period, but up to then my periods have been grim since I had DS and the abdominal pain is still here.

Okay. I have been referred to a fantastic consultant who is now offering me a laporoscopy to investigate for endometriosis. I am really pleased because I know it can take some women years to get taken seriously by the system and get this kind of referral.

I really want to find out why I am in pain so much of the time but am scared of the op (GA, risk of complications, needing time off from work & childcare for DS etc).

So...

...how was your laporoscopy, then?

VivaLeBeaver Fri 01-Apr-11 22:58:19

I've had 2.

First one was not good afterwards, was in severe pain for about 5 or 6 days afterwards. I'm talking unable to get out of bed, thought I was dying pain. Pain was all in my chest and shoulder and found out afterwards that referred pain is quite common due to the gas thats pumped inside you.

Had another one a few years later and this time I took peppermint capsules as its meant to help with the gas pain. I was fine this time though a nurse friend reckons this was a conincidence and that peppermint oil does nothing.

I've got endometriosis and will be having a laparoscopy and hysteroscopy in the near future. Even with the risk of being in pain like the first time I can't wait to have it done as I'm fed up of being so ill. GAs are very safe.

openerofjars Fri 01-Apr-11 23:08:47

Thank you - I'm sorry that you suffered and are suffering so much pain. Good luck with your laparoscopy and hysteroscopy: I hope you get good results.

I am not dealing with anything like that - it hurts on and off, and when it's bad it turns me into a grumpy bastard and tires me out but it's nothing like as bad as that. I just want my quality of life back. And my energy levels. And my sex life.

I am just terrified of becoming a minor-op-ends-in-disaster story on the local news. DS is only 2.

[irrational wanker emoticon]

Vigilanteawarenessraiser Fri 01-Apr-11 23:49:22

Laparoscopies aren't too bad, I find - especially if it's just a diagnostic one and not operative. It's a good way to get used to having GAs without it being such a big deal, which is useful if you have to have an operative one done later on for treatment. The risk of complications is low if it's just a diagnostic lap and you have no specific reason for being higher risk, and even lower if your surgeon is very experienced. I'd try not to worry too much about it, if you don't have any specific risk factors. You can ask your surgeon how many times he's had something go seriously wrong in a case like yours (probably never, I'd like to bet).
It's worth expecting some shoulder pain from the gas - I'd have a couple of hot water bottles ready, or some of these wheat bags you can warm in the microwave, for when you come out. You can ask about pain relief medication beforehand. Some people say mint tea helps.
I can't really remember much about the pain from my first - it wasnt bad after the first day or two, I think, and I never thought I was dying - viva must have had a much worse experience than I did .
In my case, the potential risks of not diagnosing/treating would have been greater than the risks of the GA, etc.
Hth. Sorry you're going through all this (and you too, Viva). I found after having one that the next is just much the same, really, and you know what to expect and it isn;t scary at all.

kreecherlivesupstairs Sat 02-Apr-11 05:57:17

I have had five, three diagnostic and two for treatment. The worst thing, like Viva said is the referred pain. I've only ever had that once though following my ovary drilling.
I am not sure how much peppermint caps work, they certainly make your poo smell lovely and you get the added bonus of a ring of fire when you go to the toilet to pass solids.
GAs are very safe, go ahead and have the surgery.

AttilaTheMeerkat Sat 02-Apr-11 09:08:03

Endo is not picked up on any ultrasound scan so am not really surpised that nothing was seen. These deposits are very small. Endo can also make sex very painful; infact deep pain during sex can be very indicative of endo being present.

I was bloody scared of the op as well but in my case the fear itself was far worse than the reality of the op. Also I was fed up of being in pain leading up to and during menses. I would certainly put myself forward for another lap if clinically needed. GA is really very safe and the staff put me at total ease. You will not end up as a minor op ends in disaster!.

The worst thing I found about the type of laparoscopic surgery I had was the shoulder pain afterwards (CO2 gas is used to inflate the abdomen and give the surgeon a better view of the organs. That gas travels upwards post op). I was working at the time and was advised to take two days off work post op. Painkillers helped with the worst of the shoulder pain, the rest of me was okay.

You should have a follow up appt post lap (say a week or so post op) to discuss the findings. They should not be telling you about the lap findings immediately post op, this is poor practice. You do not want just a diagnostic lap as this may well entail more surgery. They need to actually remove the endo deposits that are found at the time.

www.endo.org.uk is a good website to look at.

takingchances Sat 02-Apr-11 10:44:55

I just had one on Monday! Here's exactly what happened (hoping all these details will help):
Had light breakfast at 8, the cut-off point for eating prior to op. Went into the London Bridge Hosp at noon, registered and sat on the bed chatting to my sister and reading magazines.
Nurse came and took blood pressure & temp, did a preggo test (even though there was not a snowball's chance in HELL that I could have been preggo), and asked a tonne of questions for her forms.
At 2.30 I put on the naice-looking robe and pants, then the anaesthetist came to see me. I was worried about the GA - that I wouldn't go under properly and would feel the surgery. She was brilliant, totally put me at ease. If you are in generally good health then the GA is very safe.
Then the consultant came and reminded me of everything he was doing and the risks. I had a combined laparoscopy/hysteroscopy and also a cystoscopy which is where they look inside your bladder. I signed a consent form and he trotted off.
Then at 3.30 the nurse came back, put a dressing gown on me and we walked up to the day surgery area. She was talking to me about random stuff, I guess to distract me (I was v nervous at that point).
Then I lay on the trolley thing, they hooked me up to a heart monitor and the anaesthetist came back and said "ok you'll feel a pinch now" and in went in the needle. The lights started swaying and I was under.
Next thing I knew, I was coming around in the recovery area and they administered morphine. I did not feel anything and slept until 5.30, then they wheeled me back to my room where my DH was waiting.
The consultant came back at 7.30 and told me I had extensive endometriosis which he had lasered off. He showed me photo's and told me the surgery was well worth doing (he also had a DVD but I declined that!!!).
I'll be honest, that first night was not great - I was very crampy and uncomfortable but it was mostly like a bad period, nothing that I couldn't handle. I kept ringing the bell though and I had painkillers on tap smile.
Went home on Tuesday and slept most of the day. Every day since then I have been getting a bit better and yesterday I was up for most of the day and put on a tracksuit and did a bit of laundry. Today my sister is coming over for lunch and we might go for a little walk. Recovery is slower than I was expecting but it is not horrendous. You just need to give yourself time and patience. The worst thing was doing a poo after the surgery because I was bunged up from the GA and meds and was scared of it hurting. But I took a fibre drink and it was ok in the end grin.

I was supposed to go back to work on Monday but I will work from home and go in on Tue/Wed.

I would whole-heartedly recommend going for the lap if it has been offered to you. I suffered from awful pain after sex, shocking pain going to the loo when I had my period and v bad PMT. My GP and 2 other gynae's had told me there was no issue and prescribed Ponstan...but I knew something was wrong. I am so glad that I have a diagnosis, that the endo is lasered off and I am looking forward to just getting on with my life.

You can of course PM me if you have any questions at all, I am more than happy to help (and I am housebound with only my laptop for company!!)

VivaLeBeaver Sat 02-Apr-11 16:15:25

I'm going to ask about having a cystoscope done as well. I'm getting terrible recurrent UTIs for the last 6 months and I do wonder if it may be connected to my endometriosis.

takingchances Sat 02-Apr-11 22:37:51

Same as me Viva, kept getting UTI type symptoms but urine tests came back clear. My consultant was a urogynaecologist and says I have chronic bacterial cystitis, the kind that doesn't show up in urine tests. Also there is endo all over my bladder which explains some of the pains.
The cystoscopy was fine, weeing afterwards was v sore but only for a few hours, now it's grand.

openerofjars Sat 02-Apr-11 23:36:40

Thank you all for your brilliant and considered responses. I'm going to get it booked.

takingchances, I really appreciate your description: it was really useful to get a blow-by-blow account of what it was like at each stage.

Some background: I had a few operations under GA after a car crash when I was little so I think I'm transferring some anxiety from that. Your description of the anaesthetic taking effect rang a few bells and I think I can go through that again.

I have pain (sometimes mild, sometimes draining) in my lower left abdomen all the time, sometimes up to my ribcage and down to my knee on that side, and need to wee quite frequently, but I guess that could just be normal for anyone who has given birth. It hurts more after sex and sometimes during. I had a copper coil for a year and it's been better since I had that removed.

I think it's not knowing what it is that gets to me: laparoscopy is the next step towards finding out.

Thank you again for helping me to find the courage to do this.

openerofjars Sat 02-Apr-11 23:39:24

Atilla, thanks for the info on what to expect re followup, and the reassurance. I must stop googling and reading local news. It's worse than Take A Break.

VivaLeBeaver Sun 03-Apr-11 07:39:35

Takingchances - I get loads of UTI symptoms but nothing grows in the lab. However there are leucocytes when the urine is tested with the dipstick.

What are they going to do for you - do they think that lasering the endometriosis off your bladder will have sorted it out? My UTIs are so bad now that tthey're worse than the heavy periods which is what I went to teh GP with in the first place.

OrangeBernard Sun 03-Apr-11 08:00:45

Heat pads help massively with the refered pain

takingchances Sun 03-Apr-11 09:48:09

Well done Opener, it'll be great to find out what's causing the pain on your left side. Let us know how you get on!

Viva, he has given me a long course of antibiotics for the cystitis and has taken a biopsy of the endo on my bladder and then I'll have a follow-up consultation in 4 weeks' time. Will let you know what he says.

fallingandlaughing Sun 03-Apr-11 10:57:05

I've had one.

I was surprised at how bad the pain was on the first day, but it soon improved. I also threw up a lot straight after, which wasn't nice. The first week I was quite stiff, tender and tired, after 3 weeks I was pretty much back to normal.

My consultant told me I would be back to normal and able to have sex after 3 days!

They only found mild endo on mine and now suspect IBS. The pain has disappeared during pregnancy so I am not sure. Maybe we will know one day..

Good luck with it all.

And get a nightie rather than PJs!

pushmepullyou Sun 03-Apr-11 21:40:01

I had one that found and lasered off mild endo a few years ago. It honestly wasn't bad at all. I had two key hole incisions, one by my tummy button and one on my bikini line. I was out of hospital within eight hours (as soon as could eat a cheese sandwich grin ). I felt a bit tired and ropey from the GA the next day, but pretty much fine the day after with just a bit of bloating and general discomfort, but no real pain.

It was definitely worth doing. I was looking at probable infertility, but have since had 2DC, both of whom I was fortunate enough to conceive on the first month of trtying grin. Plus the hugely improved periods (were 16-19 days, now 5-6) and lack of pain during/following sex are a big plus!

It's always worrying having surgery, but the risks are very small and the potential benefits enormous. Good luck smile

VivaLeBeaver Tue 05-Apr-11 16:25:11

Haven't had my official appt yet but asked today if I can have a cystoscopy at the same time as everything else (I work with the Drs so see them most days). They don't do cystoscopys, I need to see a urology type person apparantly if I need one done.

theghostofposhlymanor Tue 05-Apr-11 16:50:58

I've just had one too. The pain is not bad at all. I've had two operations on my abdomen before (Csection and op to remove ovarian cyst) and this was a walk in the park compared to them. I was up on my feet as soon as I came round from the anaesthetic and not in much pain. Was bleeding a little bit (like a light period).

I don't react well to anaesthetic though and was very faint for several hours after, had low blood pressure and was also sick. Also had problems going to the toilet - they won't left you leave until you've had a wee and I couldn't wee!

My stomach was tender once painkillers had worn off, still sore now four days later and still bleeding a little. And also it hurts to wee but I'm seeing GP about this tomorrow as I don't think this is normal afterwards, so may be a UTI.

petal2008 Fri 15-Apr-11 14:24:41

I had one on Wednesday. I was very scared, mainly of the GA but everyone was really kind. Had op about 3.30pm and went home about 7pm. I seriously underestimated how crocked I'd feel and am hobbling around a fair bit at the moment. (Brings back memories of C-Section) The main problem I have is feeling like I've got a full bladder all the time so not slept very well and struggled to have wee yesterday. Going a bit better today but not sure whether bladder is a bit inflamed. Aftercare nurse said bladder would feel a bit bruised so to give it time but I've booked a doctor's appointment for Monday and see how it goes over the weekend. If I'm still the same I'll go and see if I need antibiotics.

I was diagnosed with stage 3 endometriosis which was very widespread so will have to go back to see surgeon in about a month. Said I would have laser treatment or may need hysterectomy. Have been given 3 mths worth of hormone tablets to stop the bleeding.

I would recommend it as I had a couple of scans which did pick up a small cyst and fibroid but not enough to cause the pain so consultant pushed for op although I did resist the first time hoping pain would go away (even though I had been having it since the summer - wishfull thinking).

Hoping the tummy swelling will go down soon as I look about five months pregnant!

Given sick note for two weeks.

openerofjars Wed 22-Jun-11 09:43:24

Just to update, I had my operation yesterday morning & got home at about 4 in the afternoon. DH is being great & the cocodamol is lovely. Feel a bit shit today but am sure another 18hr sleep will help! The pain is worse today but I suspect it may be because the morphine has now worn off.

The surgeon said that they found a tiny bit of endometriosis, which they zapped, but also enlarged blood vessels in the area of the pain. They can't really do anything about that, so I'll find out about what it means in terms of pain management at my follow-up appointment.

I got to see the pictures of my insides, which was fascinating and a bit weird.

I am also having problems weeing: it feels a bit like I have cystitis.

Good luck with your follow-up treatment, petal2008.

KilledBill Wed 22-Jun-11 10:20:47

Hi openerofjars - was just about to write about my experience then saw your update.

Do you know anymore about the blood vessels? Because I think thats what they think is wrong with me but they told me when I came round, after giving me more morphine, and im a bit confused!! Havent had any follow up either.....

eurochick Wed 22-Jun-11 12:13:25

The problems weeing could be due to not having much in the way of liquids on the day of your op (always likely to bring on symptoms if you are prone to cycstitis) or the drs squashing your bladder/urethra to get at other stuff.

openerofjars Wed 22-Jun-11 14:59:20

Killedbill, how long has it been since your op? I can't remember if they told me anything about my follow up but if it's been a while you should deffo phone the hospital.

I can see now why they don't tell you much at the time: yesterday is a bit of a blur now .grin

Weeing is getting a bit better: my BP was really low yesterday, which I maintain is down to lack of caffeine, but the nurse said could be dehydration.

KilledBill Wed 22-Jun-11 16:22:06

Its been a few weeks. I think I remeber something about going to see GP to discuss results but cant really remember!! I did have a search with what I think they said, and it looked like something that basically gives you the pain and problems of endo, but isnt endo. It also cant be cured I think, not sure regarding fertility.

Please update if you get any info out of them!

openerofjars Wed 22-Jun-11 16:57:25

If you had surgery, were you not referred to a consultant? That's how it works here. I think my follow-up appointment will be with the consultant I've been seeing all along, who was also my surgeon.

Phone the office that organised your op & ask what happens next & if they try to con you off by telling you that you've been discharged, insist that you have a follow-up.

The doc who told me about this yesterday said that they never do follow-up appointments straight after surgery as patients don't remember them, but I think he said it would be within a fortnight.

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