Rescheduled lap date has been confirmed -... - Endometriosis UK

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Rescheduled lap date has been confirmed - now I'm in two minds

priyainindore profile image

Hi all,

I was originally due to have my diagnostic laparoscopy at the end of March but due to Covid it was postponed. I've just been told that it's been moved to a private hospital and is on the 9th July tentatively. Since lockdown, I have continued to experience the usual pain, but also came the realisation that if it is adhesions due to c-section scar, a lap may further give me adhesions. I also looked into alternative therapies, and have my first face to face apt with a private pelvic physio on Monday. Ultimately, we want to try and second baby, and we just last month started (come what may).

I have also been managing pain in between cycles much better through diet (no gluten, dairy, and caffiene limited as well as alcohol - literally a glass a week if that). I still get constipated a lot and gassy, have had MRI pelvis and abdominal scans and no convincing evidence of deep endo, but who knows.

I know only I can weigh up the pros and cons and balance my everyday quality of life vs potentially improving it etc... but I wanted to ask others what their experiences have been having had a c sections and then key hole surgeries after that. I appreciate that a lot of women here have had multiple surgeries and it's a sensitive area.

Im basically torn between just getting it done or holding off a bit longer to see if I can self-manage in another way. hope this makes sense amidst the waffle. I have explained my symptoms loads on this forum previously but generally lower right side abdominal/pelvic pain referring to upper back, and usually ovarian pain too.

Thank you lovelies

21 Replies

Hello, firstly sorry for your pain. I too have csection scars x2 babies my lap showed mybladder was actu6stuck to my c section scars. It showed I have stage 4 endo and I need surgery on my bowl. Bets thing I did getting a lap put my mind at rest that it's not all n my head. I was meant to have my op in April. I still awaiting a date xxx

Hi there thank you for your reply and sorry to hear you had this. Did you have an mri before this? Did you experience symptoms this after the second lap?

I forgot to mention always have a feeling of full bladder and go every half hour but dont always empty, may also be due to being constipated and not being able to fully go.

Hello

My most recent lap (4th one), showed adhesions under my csection and appendix scar (open surgery scar), but no adhesions under my previous lap scars- they are tiny! All previous laps were done prior to my csection in 2009. Appendix removed in 2003.

Personally I think a lap is the only way forward. I cant remember what I told you in a previous message, but my most recent lap showed no endo (which I can't get my head around as I was diagnosed over 20 years ago and had it removed about 14 years ago.) My consultant is now working under the conclusion that I have adenomyosis.

Please feel free to ask me anything....your symptoms sound so similar to what I experience.

Gx

Hi there, I've decided to proceed with it. Thanks for letting me your experience. Did you find the first laparoscopy helped to diagnose and treat some of your symptoms? Did your symptoms start after the c section? I'm keen to start trying straight after. x

Hi there

My first lap didn't diagnose me- my second one did, then during the third one, I had treatment. This was all before I fell pregnant and had my c section with my first full term baby 11 years ago. I breast fed for essentially a year so had no period during that time. When my periods did come back, they were more manageable. I then had our second baby 7 years ago (vaginally) and also breastfed for a year without a period. I think all of this gave my body a good break, but over the past 6 years my periods and symptoms have gradually worsened. I wouldn't say that say of my worsening symptoms were due to my csection- but can't say for sure.

Your lap will be over and done with before you know it and at least you will then hopefully have some idea of what's going on and hopefully be able to move on and have a glorious pregnancy. Xx

Thanks dear. Did your first lap indicate anything? My biggest fear is them not finding anything, and in a strange way you want them to to validate the pain...does that make sense?

Of course that makes sense! We all just need something that tells us we're not over reacting and that we're not insane!

I was only 17 when I had my first lap (26 yrs ago 🙈) and it was done under a general gynae- so I guess that's why it wasn't found- very little information back then. And when I was diagnosed, I was handed a leaflet and told that the chances were that I would never have children....I was 19!

They found no endo when I had my 4th lap in December which blew my mind (and my consultants!). All my symptoms pointed towards a return of endo. However, the symptoms also indicate adenomyosis which is what my consultant thinks I have.

Prior to your lap, ask them about the possibility of adenomyosis. Are you also having a hysteroscopy at the same time?

Gx

So this consultant I'm having is gynae not specialist but appears to know his stuff. I really hope it's not a wasted op as the private consultation I had on friday with a consultant for a second opinion mentioned the possibility of adenomyosis. Is a hysteroscopy to check my tubes? If so the consultant I sought my second opinion from requested that I ask the consultant doing the lap to check this with dye at the same.time.

Do you think it's worth having a call with my consultant to verify how much he knows.

The hysteroscopy took a sample of my womb to see if there was anything unusual going on. But the dye through your tubes procedure seems like a wise idea given that you would like to try for a baby.

If I were you, write down a list of things you want to know and give your consultant a call. It will give you confidence in both yourself and your consultant. You got this!

As for birth number 2 - I was due to have a second csection, but my baby girl had different ideas! Giving birth naturally was tough- but I'm so pleased that it happened. Xx

Thank you - yes I definitely will do. Were your subsequent laps with endo specialists? I just hope going with gynae general is okay. I mean I don't know for certain it's endo or just adhesions/cyst etc...

I'm ovulating now and defo have a lot of lower back pain

Tbh I can't remember, but my last one was with a specialist and in a private hospital. He did find lots of little fibroids inside the lining of my womb and a 5cm cyst on my left ovary.

Ovulation pain is rotten. I also get nasty cramps before and during my period, then the horrid right hand side pain up to my ribs as my period is ending and just after is finishes. Feels like I'm on a pain roundabout! X

Sorry me again, last question, is it plausible that they find cysts which the trans vaginal ultrasound and MRI didn't pick up? I know they only picked up a fibroid and a nabothian cyst which i'm told is normal?!?!

Now that is a question I can't answer I'm afraid but your consultant could. From what I understand, nabothian cysts shouldn't cause any issues or pain. The fibroid however, dependant on size and location could. But I'm not an expert by any means!

And don't apologise! No need. Xx

Ps

So happy to hear you could have a vaginal birth post c section

Hello there.

I have had 4 C-sections. So as far as adhesions and scar tissues go i am maxed out. I have been told by many doctors and consultants (some private) that I should avoid surgery due to the high risks involved with already having so many surgeries there and to avoid even more adhesion/scar formation. They didn't think it was the answer unless of course an absolute last resort.

Please bear in mind that endometriosis has no cure and even after surgery, both pain and lumps can come back (sometimes worse) sometimes as little as a few months and not to mention more adhesions/scar tissue! Surgery can offer temporary relief and you may find yourself having to keep repeating these surgeries to get more relief if/when pain comes back. I took all that into consideration and decided against it. However this is your choice of course.

I decided to control it with going on an anti-inflammatory diet, gentle yoga/exercise and taking time to reduce stress and relax. Its early days yet but I have already seen an improvement in pain since my last 2 periods and this one. I'm not running marathons but i am not bowled over in pain in bed for 5 days and walking like an 80 year old! :D I am up and about a bit more and pain, whilst still there, is more manageable and less ruthless. It's been hard giving up all my favourite foods but its been worth it.

I have just started a plant-based diet this week and having now also cut out meat i have felt better, lighter and have more energy. I have yet to see the results if this diet but I have heard from others that it has been a godsend for their symptoms. I also do intermittent fasting. I also fast 2 days a week for 24 hours.

I haven't totally ruled surgery out, I am just leaving it as an absolute last resort should it suddenly get worse, should the lumps start affecting organs etc etc spread or whatever but right now it doesn't seem to be. I am happy with the results i am getting with just eating well. So i am sticking with this. I really can't bear the thought of any more surgery especially with having kids to take care of and an elderly mum and mum-in law!

Anyway that has been my personal decision and its helped me. I hope whatever you decide that it helps you and gives you a pain free life, even if a little.

All the best!

M x

priyainindore profile image
priyainindore in reply to

Really good to hear that you can control it in other ways. As I mentioned I'm noticing the difference re pain already.

My only annoyance is this feeling of pressure in pelvic area, bloatedness and a feeling ness of a full bladder and constipation. If I can try to manage this through more exercise that would be good. Yoga helps but I'm hoping to just try and strengthen pelvic area and tummy which is a hot mess at tue moment.

I'm going to get a private consultation with another gynae for a second opinion next week. I'm then going decide whether to see how the next 4 months go with these changes as well as physio input etc and trying to conceive naturally.

in reply to priyainindore

That sounds like a good plan. I hope everything works out well.

This annoyance you mention seems to be what they refer to as 'endo belly'. I am afraid its part and parcel of having this condition and although i never had it before, lately i seem to be getting it too. It irritates the digestive system depending on where its growing and how far. It's also a reaction to the internal bleeding that seems to come with having endo, all tissues are inflamed inside.

The problem with this condition is that is affects everyone differently, grows differently, spreads differently, even pain levels and types of pain are different which is why we are getting these arrays of symptoms and which not also confuse any woman who has it but also seem to be confusing the doctors by the looks of things!

I haven't come across a more insidious condition tbh. Let's hope we can control it and see some relief soon.

All the best

M x

priyainindore profile image
priyainindore in reply to

Ps. Thanks so much for sharing your experience xx

Nw. Anytime 💞

hello for the constipation, have you tried prune juice, i tried nearly every constipation medication there was and during my pregnancy my midwife mention prune juice, and being completely honest it is absolutely disgusting but works wonders. i have a full glass of prune juice and then a glass of water before bed i am all sorted by the morning cannot rate this enough

Yes I bought some last week. I find if I have too much fibre though I get really bad smelling gas - like sulpher.

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