Endo advice please

Hi ladies, this is my 1st post I've been reading through lots of other posts and comments and it's been really great for getting to know about my lap and recovery I just wondering if any of you could offer a bit of advice.

I've been in pain since spring last year back and forth to the Drs who finally suggested referring me to gynae, my dr at hospital was wonderful and straight away offered a lap which is on the 5th Feb.

September and October were brutal the pain was constant and drained the life out of me, since then things have settled down and I've noticed over the past few months that I seem to be reasonably ok for 2-3 weeks then have 5 or 6 days of hell which sounds like a normal monthly cycle but as I've been on the Depo injection for years I don't have periods so I don't know if it's just coincidental or my natural cycle fighting to show through? Any thoughts?

My pain ranges from light cramping over lower abdomen to really strong pains in nunny and sometimes my bum too. Shooting pains over my ovaries, pains that feel like somethings in a vice, dull stupid little pains that last all day and leave me exhausted by midday.

Also I've realised recently that if it is endo whilst the surgery will help it's not going to end it and I'm gonna be stuck with this for the foreseeable which is pretty depressing as I've been thinking of my lap as the light at the end of the tunnel. Still terrified I'm gonna come round and be told everything looks ok and no endo and then I'm gonna have gone through it all for nothing.

Bit of a long rambling post I'm sorry but thought I'd put my self out there for you all instead of lurking on the sidelines!

11 Replies

  • I'm in the states I can't find a site like this so joined hope we do same treatment listen I had partial hyster for endo in 2014 and it returned with the vengeance and formed a mass that all drs blew off til I insisted something wrong finally two days ago had my obgyn remove overies n tubes i m told that's the only way to end this painful stuff. Good luck my friend its not in your head!!! Get checked

  • So sorry you are in such pain and discomfort, it really is awful.

    I had my lap last week and when I came round was told there is no endo or adhesions - at that moment I was upset nothing was found as like you, I think I was pinning everything on the lap and diagnosis, my GP and gynae seemed certain it was endo and I had done so much research! However now I can see that it's positive and not a waste of time - my insides are healthy and I am another step down the road! I know I still have lots to go through as I still don't know what is causing my pain but I will cross those bridges once I am recovered!!

    Hope that your lap goes well and you get the answers you need xxx

  • I can imaging it was really disheartening being told nothing was there but you seem to have a really positive attitude (which I'm lacking today) and it's really great knews that your insides are healthy. Hope your Drs find out what's causing your pain soon it's such a grim part of our lives isn't it? Wishing you a speedy recovery and your back on your feet soon xx

  • I'm sorry you are feeling down today, it's such an emotional roller coaster! The first couple of days after my lap I felt confused, convinced he had maybe missed something and that I had gone through the lap for nothing but then turned a corner and realised it is good news that things look OK and that once I'm recovered I'll see how the pain goes and carry on trying to find out what it is! It is a horrible part of life, but I do feel lucky as it could be much worse. Next step is I need to follow up part of the gynae comments on my post op letter that said 'no evidence of significant endometriosis or adhesions found' as this has led to more confusion the past day or so as he said none at all was found immediately after the op!! Maybe just medical speak!!

    Thank you, I have another week off work and hoping I'll feel like me again next week!


  • At least if your a week or so in you can have a soak in the tub! I'm dreaming of a lovely bubble bath already!

    I'd check (just to be 100% sure) about the wording in your post op letter but then I can be quite anxious and something like that would just set me off!

    Have you had a chance to speak to your dr about what your next steps are? Mine said if there's no endo he will look into it maybe being my bowl which I've done zero research on just to not cloud my mind with a tonne of info.

    It really is a roller coaster isn't it? Everyone around me keeps saying I'll feel better after surgery and like I said in the post I'm really realising now that this is a seriously long term issue. Not sure whether to throw myself into my new diy project (hello shabby chic dressing table) to take my mind off it all or just have a right good cry and get it out of my system.


  • Yes I'm looking forward to a bath - dressings coming off tonight! Only had a shower on my own last night as I've been quite sore and it wasn't easy to stand up and wash hair etc. My hubby is now a hair blow drying expert!lol

    Yes I will check, thinking it over overnight I'm sure there is nothing to it and just me picking up on every little thing looking for answers. I have my post op appt in March so will chat to gynae then and also gives me few weeks to see how symptoms are, then I can discuss next steps!

    I'm not really sure I feel better now, I guess it is because I have no answers so I really hope you get the answers you need. These things play on my mind and I over research!!

    I would definitely go with the new hobby - sounds like a good thing to take your mind off everything.


  • Hi Jenny

    I assume your lap is being carried out in general gynaecology which is the usual course. This will essentially look for peritoneal endo (on the pelvic lining) and ovarian endo (ovarian cycts on the ovaries). There is a place behind the uterus called the pouch of douglas that has a deep fold of peritoneum in which endo can be found but this can be missed in general gynaecology. Also it is possible to have endo outside the peritoneum which would not be visible at a lap. Stabbing pains up vagina and/or bum can indicate deep endo that might not be seen. Please note that we have specialist endo centres where any severe or complex endo must be dealt with so treat this as the first stage of the journey. First of all I should inform the surgeon or someone who can inform the surgeon that you don't want any severe endo tackling - you would want referring on to a specialist centre as required by regulations. I would write this down and keep a copy. At the other end of the scale you if are told they haven't found any endo don't take this as conclusive as they may have missed it or not seen it in deep places. Let's see how the lap goes and work from there. Click on my name and have a look at my post on how to find a specialist centre if it does seem to you need more specialist care at a later date. All the best for surgery. x

  • Thank you so so much for your reply and info, ive heard of the pouch of Douglas but never knew what it was, I won't speak with anyone till the morning of lap now so I'll ask my surgeon then (still don't know who it is) if they will look there. Can I ask why I'd ask to not have severe endo not treated then? Is it just a case of having it dealt with by a specialist? Just getting my head around this is actually happening and the thought of more surgery is a bit overwhelming but I'm having a pretty emotional day anyway so it's probably just that. Thank you again for your reply I really appreciate you taking the time xx

  • You could have what might appear superficial peritoneal endo in the pouch of douglas, and might actually have just that, and a general gynaecologist would usually just ablate it (burn the surface) as they would any other endo they find. This would be considered within the scope of a general gynae but ablation is not a thorough treatment and is associated with rapid recurrence rates as the endo was not removed in the first place. Specialist surgeons excise disease which requires more skill. But deep/severe endo is a different kettle of fish and requires the additional advanced training of a highly skilled specialist as it is very intricate surgery. General gynaecologists without such training can cause damage to nerves and increase the likelihood of adhesions forming after surgery through unskilled and unnecessarily invasive surgery. The Royal College of General Gynaecologists requires that only such skilled surgeons must deal with severe disease in specialist centres and additionally for English patients there is actually a contract in place requiring this. Any general gynaecologist attempting stage 3/4 or rectovaginal endo would actually be in breach of regulations.

    I should have a little break from your thoughts for now and try and regroup. Then have a look at my post on rectovaginal endo and look at all the links that explain the regulations. We don't know that you have this so try not to get too anxious but it is best if women with suspected endo with suggestive symptoms gain as much info as they can as it is a sad fact that GPs and gynaecologists rarely know how endo should be treated even though they are required to keep up with regulations. We women usually have to take charge of our own treatment and it will give you a sense of being in control once you have got your head round it. x

  • Very well said lindle! Its soo awful reading the same stories over and over about women who are misinformed and gps and gynaecologists, advising and treating from such seemingly uninformed positions :-/ its great you are so active on here informing ladies who really realy need it.

  • Well, I went in on Friday and had all my checks and chats done had my tag on waited 2.5 hours and got called through to say they were having to cancel the surgery as they didn't have any beds. They sent 3 other people home too, one of which had booked a month off of work for her recovery. I can totally appreciate the curcumstances and that it really was out of everyone's control but I left the hospital absolutely full of hell! My darling boyfriend had the kettle on and a bacon sandwich in the making before I'd got my coat off bless him. The waiting list dept called that afternoon with a new appointment in 3 weeks so whilst I'm impressed with them it's the planning and prep to do all over again that's hard work. At the moment I don't feel worked up about the surgery it's getting my daughter/nursery/daughters dad and my mum (who lives 4 hours away) all scheduled again!

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