Laparoscopy

[Amz6219]

I have an appointment with gynaecologist next week re possible endometriosis.

I have seen that it would need to be diagnosed through laparoscopy - does anyone have experience of diagnostic lap v treatment lap?

How long is the wait in between if they find it on diagnostic lap?

TIA!

[hthhthhth]

Hey, normally if they see it during diagnosis they will treat it at the same time. Hope you get the answers/treatment you are looking for. Good luck!

[Amz6219]

Thank you!

I have had to go private because my GP thinks it is muscular.. honestly don't want to get started on that!

I noticed on his pricing it says 'Laparoscopy (diagnosis)' and then tons of other descriptions (excision from bowels etc etc) so I thought initially it looks like it would be solely diagnostic??

[hthhthhth]

Ooh okay. I'm not really sure. I had to go private too but have medical insurance - they just put it down as one procedure though. Diagnostic + excision of whatever they find etc. My surgeon said this was normal practice though because doctors are meant to try to limit the number of times a patient undergoes general anaesthetic etc. And if they're already in there then they really should just remove it at the same time, rather than putting you through another surgery. Maybe they just price it separately as if they don't find anything they won't charge you for the removal?

[Amz6219]

Ah ok yes, that makes sense! Thank you!

I am concerned that I have diaphragm endo too so I don't know how they will diagnose that unless it can be seen on lap.. fingers crossed!

[Amz6219]

@hthhthhth

Ooh okay. I'm not really sure. I had to go private too but have medical insurance - they just put it down as one procedure though. Diagnostic + excision of whatever they find etc. My surgeon said this was normal practice though because doctors are meant to try to limit the number of times a patient undergoes general anaesthetic etc. And if they're already in there then they really should just remove it at the same time, rather than putting you through another surgery. Maybe they just price it separately as if they don't find anything they won't charge you for the removal?

Can I ask another question @hthhthhth..? Sorry!

How long was the wait between suggesting lap and the actual surgery?x

[hthhthhth]

Np. It was just a couple of months although they said that was longer than usual because they had a lot of cancer surgeries to catch up on since covid had delayed everything. Still much quicker than on the nhs which I have seen people wait over a year for.

The more that I think about it, I think it would be a little cruel to have a look inside and just leave you with whatever they find so I think it's really likely they would remove it at the same time!

[AttilaTheMeerkat]

Do not undergo a diagnostic lap necessitating further surgery; you do not want to have more surgery than you absolutely need!. If it is found it needs to be removed at the same time. How confident is the surgeon that endo will be found here?.

You should also have a follow up appointment a week or so post surgery to discuss the findings. You do not want to be told about the findings in the recovery room!. Its poor practice apart from anything else.

www.endometriosis-uk.org/ is a good website.

[Amz6219]

@hthhthhth It would be a bit cruel to just look and say oh yes there it is and leave it wouldn't it..

@AttilaTheMeerkat thank you! He's an endo specialist and so far have only had one consultation but am back next week to see him so he can do scan/examinations. From what I have read he is unlikely to find anything that way? But I think he is fairly confident that it's endo.

I have always had mild symptoms but never enough to particularly interfere with my life (spotting before periods, painful periods, painful bowel movements on period, IBS, ovulation pain and lots of bloating), but I miscarried earlier this year (very drawn out MMC) and have been in pain from the top of my leg up into my ribs on my right side ever since. It's every day with no respite at all, and I cannot cope with the pain anymore! I have been to A&E for suspected appendicitis, kidney stones, UTI and to the GP who thinks its muscular (it is not) but CT scan, Ultrasounds, bloods and urine all clear.

When I mentioned it to my Mum she said she's read up on it and is sure that's why she had hysterectomy at 40 (in the 80s) because she was fainting and having a blood transfusion every period! I'd never even know that!

[AttilaTheMeerkat]

Your "mild symptoms" could very well be down to endometriosis. I was finally diagnosed with endometriosis in my early 30s and I had those symptoms also. Its often midiagnosed as IBS too as it can get onto the intestines. Am appalled but not overtly surprised to see a lack of diagnosis to date; it is very much underdiagnosed and simply not recognised by some people in the medical profession. I had one GP tell me post diagnosis that endometriosis was uncommon; I replied that it is actually the second most common gynae problem seen in women after fibroids.

Its not normally picked up on the tests you describe as the endo deposits are so very small. I have had more blood tests and internal ultrasound scans than I care to mention as part of previous fertility treatment and none of those detected the endometriosis. A lap type operation did and endometriosis was found all throughout my uterine cavity.

I would also think endometriosis was the root cause of your mother's problems too.

Do let us know how you get on.

[hthhthhth]

I am really sorry to hear about your miscarriage. It's tough. Recurrent early miscarriages is actually what prompted me to finally investigate endo because my gp had told me years earlier that he thought I had it but that there is no treatment (wrong). And my lap surgeon who specialises in endo said there is a link between endo and miscarriage but that apparently is another thing a lot of doctors refuse to acknowledge. Anyway, I don't want to get your hopes up because my surgeon also said that often they don't find anything, but for me it answered years of questions. And I'm praying it does the same for you. 🙏🏼🙏🏼 it too saddens me that so many women are living in pain and not knowing why. Sometimes never knowing.

[cathyandclare]

It's better to go to a BSGE approved Endometriosis Centre if at all possible ( or privately with someone who works at one.) Research shows better results when complex endometriosis surgery is in expert hands.

[Babymamamama]

I had a diagnostic lap where the surgeon went on in to remove "extensive diffuse" endo in the same procedure. It was a good experience for me. Prior to the surgery I had constant pain and difficulty conceiving and miscarriage. Post surgery I went on to have a successful pregancy and was pain free. I felt very lucky. Wish you all the best for your treatment.

[jcurve]

Agreed, you must see someone who ideally heads up a BGSE centre on the NHS.

Endometriosis diagnosis & surgery skills are extremely difficult to acquire and if you’re paying privately you owe it to yourself to see someone who has more than an interest in endometriosis, you ideally want to see someone who spends the bulk of their practice seeing endometriosis patients. If they also do IVF, that won’t be them.

I have (had) severe endo and the only symptom was infertility. It didn’t show up on scans or MRI, but they found seven deep nodules (including diaphragm endo) during surgery.

[Itonlytakesone]

I have had such bad abdominal pain since June this year 😔there's family history of endometriosis, I have had bowel issues too which i think could be related. I'm finding it hard to get a diagnosis of what's causing me the pain. Pain lower left side. Wonder if anyone has had a similar experience?

Tests Iv had 3 stool samples - all clear, ca125 - clear, coeliac blood test- clear, abdominal ultrasound- clear, trans vaginal ultrasound (both internal& external) - clear. Abdominal X-ray- (showed a patch of constipation)

I am under gynae who told me (via phone appointment) it's my hormones and to take the pill - I lasted 2.5 months but it made my symptoms worse.

Bowel specialist thinks it's ibs and has put me on low food map gluten & dairy free diet. I'm on antispasmodic medicine (started yesterday) and I'm hopefully set to have a colonoscopy. If this is clear I'm thinking endometriosis and will probably consider going private possibly a laparoscopic surgery?

Any help appreciated I'm at my wits end 😓

[Amz6219]

Sounds very similar to me @Itonlytakesone ! Everything seems fine, but I know endometriosis won’t show on any scans and can pretty much only be diagnosed through laparoscopy.

I don’t think GPs have much clue either unless you push the issue. That’s why I have gone private, I’m pretty much going to beg for a laparoscopy at this rate!!

Think some other PPs will be more knowledgeable than me and be able to give more info :) xx

[Tootsey11]

I had a lap in 2009. NHS. Endometriosis found in several places. Everything was a mess, surgeon couldn't even see my appendix, he thought I'd had mine out.

But he decided it wasn't causing me enough pain, so he left it in there and stitched me up!

[Sorka]

I had surgery three weeks ago for an ovarian cyst. Endometriosis was found at the same time. The surgeon treated some mild endometriosis but told me that the more severe endometriosis with nodules she found is a more complex procedure than was planned for and would need to be done by a different surgeon.

I now need to decide if I want to have another surgery or not. I had a consultation this week with the other surgeon who told me the evidence of the risk of miscarriage is mixed and it’s up to me whether I want another surgery or not. So not helpful and I don’t know what to do.

To answer your question, whether or not the surgeon will operate if they find something depends how severe it is, whether the surgeon feels competent to operate on what they find and how much surgery time is available to operate on you.

[Itonlytakesone]

@Sorka @Amz6219 @Tootsey11

Thank you all for replying so helpful to hear what other people think because it's so hard to explain to everyone at home and the doctors are I'm sure fed up of me.

What are your common symptoms...?
I just feel like my stomach is so heavy bloated none of my clothes fit on my stomach and I'm a healthy size 12 normally and in proportion everywhere else but my stomach is just constantly massive it really gets me down it just aches I can't go out walking much because it throbs it's actually stopping me from doing anything really now. I'm going to get back in touch with gynae on Monday try to get them to see me sooner as trialing the pill didn't work for me it just made me worse.

What I don't understand is how it can just creep up on you.. I have had no gynae issues my whole life. I had a baby she's 20 months and now Iv got all these issues? But apparently my auntie was same it only reared it's ugly head later in life, must be hormonal changes 🤷🏼‍♀️

[Sorka]

@Itonlytakesone I get bleeding between periods - usually a couple of a days before my period starts - very heavy periods and clots. I also get a very bloated stomach. It’s bloated more often than it’s not. The rest of me is slim. People often congratulate me on my pregnancy or ask me when I’m due (thanks randoms )

At this point it’s hard for me to tell what’s endometriosis and what’s cyst but my stomach is still massive.

[Sorka]

I did have a constant dull ache/pressure that was definitely cyst. Exercise has been uncomfortable for a long time as I’ve felt tight/squished inside forever. I haven’t tried much exercise yet so don’t know how painful it will be.

I’ve had symptoms for years but I had IVF last year with a very high dose of hormones which I think has made my endometriosis worse.

[Amz6219]

Did anyone else constantly worry that their endometriosis might be something else more sinister?? Anxiety has gone through the roof (gynae appointment moved to next week and I’m counting down the minutes!) and I keep convincing myself it’s not Endo and it’s something worse! X

[Amz6219]

So I have had appointment with painful internal and an internal scan which showed my ovary is stuck to my womb (I have had so many internal scans I can't remember over the last few months and not one sonographer picked up on this - shows the difference between general and an expert!) The gynaecologist/specialist strongly suspects endometriosis / adhesions.

I have booked in for laparoscopy in a few weeks.

@AttilaTheMeerkat do you know what sort of questions should I be asking before and after the surgery? xx

[Itonlytakesone]

I'm being sent for a ct colonoscopy and was told this can potentially detect endometriosis aswell does anyone know? I'm having that done for bowel reasons.

[Amz6219]

Hi @Itonlytakesone, I am not sure to be honest but I think it may pick up if there are large deposits where they shouldn't be..?

From what I know / have read up on, the only definitive diagnosis can be through laparoscopy. Do you think you have endo, or something else?

I am counting down the minutes to my lap! xx

[shiningstar2]

@Itonlytakesone I have had a ct colonoscopy which picked up a thickening of my womb lining so I was referred to the gyne dept. A transvaginal scan picked up a polp in my womb, a cyst on an ovary and a thickened womb lining of 22mm. This was a week and a half ago. Quite a shock as I have no symptoms whatsoever for any of these things

I am having a hysteroscopy under GA to take out the polp as it's quite big. I was also offered having the cyst and my overies taken out by keyhole surgery at the same time. However the specialist said that cysts were usually non cancerous and we could just go for monitoring by scan every 6 months for now if I wasn't sure. I have chosen to leave the cyst until they find out about the polp. If the polp turns out to be cancerous I will have to have a hysterectomy anyway so no sense in having a minor surgical procedure if I might end up having an op which will take the ovaries anyway.

I am post menopause but was still a bit surprized she suggested taking both ovaries when one is healthy. Apparently keeping the ovaries helps avoid osteoporosis so will wait for the outcome of the polp removal.

I am also hoping they will take a biopsy of the thickened womb during the hysteroscopy so I can get some answers about that. However they didn't mention this at my appointment and questions I'm now thinking of didn't occur until I was out the door. I am having pre op assessments next week so I am assuming that the procedure won't be long after that. Will come back if I get any info that might help.