Laproscopy

[aften16]

So I have a gyno appt. On Oct. 15th. I am thinking about talking to her about laprocopic surgery to detect any other possible causes of this pelvic pain. Endometriosis has been suspected by my doctor but not proven or ruled out. Anyone else have this done? If so what was your outcome and how invasive is the surgery? Someone also mentioned that a hyterectmy might be something I should look into. Any thoughts on this? Thanks all!

[kalecolbe12]

What kind of pain and what location in the pelvic floor is it?now I have been navigating this for 10 months and have picked up a lot of info...I have pelvic floor dysfunction where the muscles and nerves don't behave normally...stabbing pain rectally for me of course I am now under pain management and pelvic floor physical therapy...but it can affect anywhere in the pelvic floor...doctors don't know how to deal with it usually so you may have to go to a pelvic floor therapist or at least get an assessment

[Alaine1 Administrator in reply to kalecolbe12]

Just a word of caution pelvic floor dysfunction can be the result of other pathology not the primary problem. Some people will have pelvic floor dysfunction on its own and it can be the result of contracting the pelvic floor unnecessarily.

My pelvic floor dysfunction developed as a result of endometriosis, adenomyosis and interstitial so pelvic floor assessment can be useful but ruling out other causes is important to do beforehand. Also in the U.K. muscle relaxants aren’t commonly prescribed

[kalecolbe12 in reply to Alaine1]

Yes I agree with what you said.... Absolutely agree that pelvic floor dysfunction can come from many causes

[Alaine1 Administrator in reply to kalecolbe12]

I love your thinking though as it’s taken many years for physio to become more mainstream in chronic pelvic pain

[Alaine1 Administrator]

Hi,

Whether you have a laparoscopy will depend on several factors. The most important is the specialist actually finding something such as endometriosis or adenomyosis etc during surgery. If the chances are small you may not be offered the surgery immediately. If the specialist believes you might have IBS and believe me many doctors and patients have believed they have endometriosis but during the operation nothing is found. IBS can be all month long and can be pain only with no diarrhoea or constipation and only flare up during periods hence the confusion over endometriosis. So please don’t be offended if you aren’t automatically offered surgery as the specialist may want you to try treatments beforehand including diet and lifestyle changes. So please do everything your specialist tells you to do even if you don’t think it will work or it requires more effort. She might want you to cut out caffeine, reduce sugar etc. Some specialists won’t operate if you are overweight and the condition will be upon you losing a certain amount of weight before the surgery. This is controversial but overweight patients are more likely to suffer adverse outcomes during surgery or recovery.

I’ve had 4 laps and endometriosis was removed. For me I find the recovery difficult especially as I have a bladder than loves to go into retention for extended periods of time so I get send home with a catheter fitted but I’ve got little muscle in my bladder so use a catheter intermittently anyway. The recovery can also be longer than many people think as it depends on how much endometriosis if they have it was found and removed. Please remember even though this is minimal access surgery there are still risks including infection, having to have the surgery changed to open surgery if needed, bleeding etc

At this stage you are unlikely to be offered a hysterectomy. My endometriosis specialist didn’t want to do this on me partly because I have 3 causes of pelvic pain 2 which wouldn’t benefit from a hysterectomy and also there is increased evidence that it doesn’t always help and there are disadvantages of hysterectomies. One being if the ovaries are removed life expectancy is reduced by 10 years and possibly more if the lifestyle is unhealthy such as smoking etc.

At this stage I’d concentrate on the appt and also be open to other causes that aren’t necessarily gynae in nature or if you are listed for surgery that you may end up back at square one if no pathology is found - you will then most likely receive a diagnosis of chronic pelvic pain which is an actual diagnosis on its own. Also be prepared to try all treatments- I’ve had everything including the mirena which is known to help many women with and without endometriosis and adenomyosis. I hope this helps

[kalecolbe12 in reply to Alaine1]

Well that's an interesting point that you said about the ovaries being removed takes 10 years off your life. I've never heard that before and why is that do you know?

[Alaine1 Administrator in reply to kalecolbe12]

They think the ovaries contains something that is critical to extending life that can’t necessarily be overcome by giving HRT. They are still trying to identify the chemical(s) all be it hormones that have yet to be identified.

I was having a conversation with my endometriosis specialist who is fantastic as I wanted my right ovary removed as this is the one that has had endometriosis ( and in other areas) on it so causes extreme pain. She then mentioned this to me. We decided not to for the time being and increase my pain medication. The research hasn’t said if there is still a risk by removing one ovary, but in theory and it does happen the other ovary goes into shock and never becomes functional again.

Having said all of this there will be cases where the ovaries must be removed especially if cancer is suspected or found or if the endometriosis has literally stuck everything together (very severe) and the surgeon accidentally damages or has to remove them to free up other organs. It doesn’t happen everyday especially as endometriosis specialists are used to this very challenging surgery.

[JoJo012 in reply to Alaine1]

Hi Alain’s, out of interest. Where exactly do you feel your endometriosis pain? I’m just asking as I have hypertonic pelvic floor muscles that causes me lots of pain and often goes into spasms, so was wondering perhaps if I possibly had Endometriosis or not?

Just considering whether I should have a laparoscopy to check for this or adhesions? I don’t really have any bad pain anywhere else in my pelvic area though, apart from in my pelvic floor muscles. Often brought on after I urinate.

[Alaine1 Administrator in reply to JoJo012]

Hi JoJo012,

It doesn’t sound as though you would be given a diagnosis of endometriosis based on your symptoms or be given a laparoscopy. The problem with adhesions is that in most cases they are best left alone as separating them can cause more adhesions to develop which can be more dense. So unless you had your anatomy distorted there is no way a surgeon would go in looking for adhesions. I’ve had mine removed from my right ovary and right side of my pelvis. I also have severe pain in my uterus caused by adenomyosis (endometriosis inside the uterus wall). Pain from both conditions is so severe I often pass out and vomit because of the pain. I also have extremely long and very heavy periods. I bleed non stop for 3 weeks then have a break for one week before the 3 weeks of periods start again. Up until October last year my last resort treatment was working but now although it’s working to some extent it’s less effective.

Have you had Women’s health physiotherapy? It is a very good way of treating hypertonic pelvic floor muscles and pain. They are available on the NHS although the waiting times are often very long and the quality of treatment can be very hit and miss as not all of them are trained in myofascial release. I went private for mine and although it was expensive (Central london) it was worth it plus she liaised with both my endometriosis specialist and urologist

[JoJo012 in reply to Alaine1]

Yes I have been having pelvic floor physiotherapy for about 8 months now and I’ve definitely had some improvement from where I first started out but recently it’s gone slightly backwards again.

I’m going privately with Maria Elliott, as I didn’t find the NHS one I saw to be very hands on or any good and the frequency of appointments was awful.

Judging from your symptoms I think it is very unlikely that I have endometriosis, as although I have fairly heavy periods they don’t tend to last more than a week and only have really bad pain for the first 2 days of my periods, which to be honest would go completely away if I took 2 Mefanemic Acid pills. I’m actually now peri menopausal anyway, so my periods are now every 3 months at the most and although very heavy I don’t really get period pains now.

Also my pelvic floor pain only started at the end of last year at the age of 49, so I’m guessing it’s unlikely to be endometriosis related?

I was just interested to know your thoughts/opinion.

[Alaine1 Administrator in reply to JoJo012]

Yes definitely good to get another opinion. Did you have anything trigger the pelvic floor dysfunction such as a UTI, do you unconsciously clench your pelvic floor when stressed without realising it so potentially undoing all your hard work?

[JoJo012 in reply to Alaine1]

Apparently according to my Urogynaecologist he said I did have a bladder infection deep within my bladder wall but that was ages ago now. Don’t have that anymore. He believes it could all be to do with ongoing chronic anal fissures I’ve had for a couple of years now.

My Physiotherapist thinks it’s all musculoskeletal/my biomechanics that are responsible.

I was doing a lot of hard core repetitive exercising before it happened. Like lots of intense classes with loads of lunges and squats in them.

Who knows though? Everyone seems to have I different opinion when I see them.

[Alaine1 Administrator in reply to JoJo012]

They might all have had a part to play in your PFD. Have they suggested other treatments? I know Botox is sometimes used. I’ve had it twice for interstitial cystitis where I had 20 injections around the bladder. For me it did nothing but might be something to look into?

[JoJo012 in reply to Alaine1]

Yes my Urogynaecologist gave me Botox injections internally but it didn’t really do much for me to be honest, bar just paralysing and relaxing the muscles down. The pain still continued.

My Physiotherapist said I may benefit from having Botox injections done externally though through my Piriformis muscles and other external muscles she’s identified. We’re still debating it at the moment though.