Apparently I should not be in any pain!??

Hi all I need a bit of advice/ reassurance please. I had a lap in July and was told after the surgery 'yes you have endometriosis' that's all I knew till today. So I went to see the consultant for follow up ( ended up being someone different). She said I have minimal active endo on uteroscacral ligaments, ovarian fossas, urethra, back of womb and peritenium. She also said I had scarring.

I told her I'm in so much pain for most of the month and she said 'oh you shouldn't be in any pain' 'we can sort it out by shutting down your ovaries, there is no need for surgery'

I asked her about excision as I am booked on with a consultant in yorkshire for surgery in oct. She said (I kid you not) 'what is that?' She had no idea that you could remove endo by cutting it away!

So I've decided to still go ahead with the private consultant as he seems to know his stuff. However I'm beginning to doubt myself again as I have for many years being told there is nothing wrong with me and that I'm just weak. It still pops into my mind that endo might not be causing my pain even though the symptoms match and obviously I've been diagnosed. Drs always bloody bring me down!! Any advice? Thanks

8 Replies

  • Oh forgot.. She said I had stage 1 endo but private guy said if I have scarring it would be at least stage 2?? Could anyone clear this up for me?

  • Forget you ever saw that supposed 'consultant' today - sounds like a below bog standard novice gynaecologist to me -certainly not an expert in endo surgery.

    If you ever get the option of surgery over GnRH drugs (the ones used to shut down ovaries) then grab the surgery option every time. Whether it is private or NHS, a decent endo surgeon will always give you the chance of being endo free by removing all existing endo.

    Drugs alone can not do that at all.

    The drugs simply make endo dormant - does nothing more than that- when you stop the drugs and the hormones wake up again - you will be right back at square one again. Still having endo as you had it before. So really it is a waste of time in comparison with surgery which does actually remove endo from the body.

    And yes scarring and the extent of the endo is definitely stage 2.

    If you had endometrioma cysts then stages 3 and 4 apply not 1 and 2.

    The word minimal is usually applied to stage 1, but given the number and type of locations and that there is scarring then stage 2 should apply - it involves a bit more complex surgery to deal with. The staging is more to do with the type of surgery expertise required than what you as a patient will feel in terms of symptoms.

    It is such a waste of everyone's time to encounter an incompetent consultant or GP, but it does happen all too often and it makes you doubt yourself as well as losing faith in the medical profession. Don't give up, it is unfortunate that there are bad apples in medical barrels and sounds like you met one today, but there are experts out there who do know what they are doing and keep on battling to get the right treatment for you. Much better luck next time.

  • Thank you for your reply! I feel so deflated today. I've just come on my period so obviously in pain but the appointment this morning has made me feel pretty low. My logical mind tells me that she didn't have a clue what she was on about but they have such a self assured way of speaking to you don't they! They don't seem to budge an inch if you question anything. Think I have been so conditioned over 20 years to believe I will never find out what's causing my pain I find it hard to accept that endo is the cause, I'm always worried that it won't be endo and will never get relief. What that consultant said today almost validated those feelings. I'm gonna try n stay positive knowing that the private consultant in yorkshire is the best. I pray to god/ universe/ fairies ha ha! Whatever is up there! that excision of the endo will stop my pain. Sorry for going on! Just one of those days! X

  • Hi there

    I had a similar experience to you and I agree with Impatient that it's definitely better to get all your endo cut out if you have this option.

    I had my first diagnostic lap in April and the NHS gynae diagnosed 'extensive very old endo scarring', one spot of active endo in the us ligaments which he lasered (I later found out this is not the right treatment, it should have been cut out) and 'inflammation' of the bowel. When I saw him a few weeks later to say the severe pain had not reduced at all and to ask what he meant by 'inflammation of the bowel' in my discharge letter, he told me I'd be completely better and back at work within a week (I had been off work since the beginning of Jan with severe daily pain) and that he thought I had endometriosis on my bowel (I don't know why the discharge letter didn't say this) and that I should just leave it and do nothing about it.

    It turned out that he didn't have a clue what he was talking about or what he was doing. The 'treatment' made no difference at all to the severe daily pain and I couldn't return to work.

    I ended up seeing a private consultant in Yorkshire (probably the same one you're seeing). He has amazing diagnostic and treatment skills in my opinion. He diagnosed my condition properly following his diagnostic lap, it was a completely different diagnosis to the diagnosis 2 months earlier with the NHS gynae and he showed me all the photos the week after the diagnostic op. I had active endo just about everywhere including deep on the bowel and bladder, ureter, both ovaries, pod, us ligaments, my right ovary was stuck to my pelvic wall, I had an endometrioma on each ovary and needed a 7 hour treatment op (to remove all the endo + to have a hysterectomy - for suspected Adenomyosis). I don't know whether some gynaes just can't identify endo properly or whether they don't want to tell us about endo they don't have the skills to treat. I'm sure there must be some excellent NHS gynaes but I'm shocked at how many gynaes just don't identify or treat endo / adeno properly.

    I have complete faith in my private consultant, everything he explained in the pre and post op appointments seemed completely logical and whether or not I recover 100%, I feel he has given me my best chance of recovery. I'm incredibly relieved I had all my endo and my adeno - uterus - removed. I still have some very bad pain days 4.5 weeks post op and I'm not strong enough to go back to work yet but already I'm far better than I was before my op and I don't need the daily cocktail of painkillers which I was taking from Jan- July (and which usually didn't work anyway). If the endometrioma cysts refill or if I get more adhesions from the op, I still won't regret my op.

    I'm still shocked at how many ladies on this site, like me, have had incorrect/ incomplete diagnoses following diagnostic laps.

    Good luck with your journey to better health. I hope you manage to get all of your endo excised and that you make a brilliant recovery! Xx

  • Thank you do much! That has made me feel so much better! It can't come quick enough the op. Would you mind if I sent you a PM if I have anyone questions about the op and consultant at some point? X

  • Hi

    Sorry...I only just spotted this! Yes, feel free to PM me anytime :-) . Xxx

  • Hi KattieTattie! :)

    Trust yourself!! You know your own body best. ;)

    You have already had excellent advice above. The only thing I can add except that the Doctor you saw was obviously talking utter sh*t!!! Is that Endo is obviously a really complicated illness with no logic to it, and that someone with a tiny bit could be in way more pain than someone with loads of it. My Gynae at one of the NHS BSGE Centres told me this and I have also read it on here too.

    Take Care xx

  • Hello Katie,

    I am so sorry for the experiences you made with your doctors. But, if good consultants or not, we know our body best and it seems to me, that you need a bit more trust in yourself again.

    Other people's opinion can sometimes throw us back and forwards...

    If you don't mind, I would like to recommend this book for you:

    "Women's Bodies, Women's Wisdom" by Christiane Northrup, M.D.

    It has a chapter about Endometriosis, but it also just helps you to be, feel WOMAN and strong.

    It is quite... holistic, but also covers every medical aspect, as she is a gynecologist and a very good one.

    It helped me a lot to find my own body rhythm and to strengthen my own opinion, considering everything 3 times before I listen to anything that a doctor or whoever has said.

    Something that N. found out and she wrote about it in her book is that there can be women with massively spread Endometriosis, feeling barely any pain and some with just little findings, but who are in massive pain.

    You are the one who feels the pain. And you do not have to justify yourself or judge or compare.

    I hope you can build up more confidence, as I think it is a good thing to share with your body.

    Look after yourself. xXx

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