Laparoscopy shows little Endo growth but I'm still living with chronic pain. What do I do?

I had my 3rd laparoscopy last Tuesday and as I was recovering my specialist came to see me. She said she hadn't needed to 'do anything' because there was no Endometriosis growth since my last laparoscopy 3 years ago. My response to this was "So why am I in constant pain then?" And she shrugged her shoulders and said maybe it's your bowel.

Moving forward, I suspect she's going to want to discharge me. She's already said that as my Prostap injections aren't working and as my laparoscopy has shown nothing new that "it can't be Endometriosis".

I've had a colonoscopy and my bowel is fine. The bowel doctor even admitted that where my pain was indicated that it couldn't be bowel related as my pain is too low down. I'm not buying that it's my bowel.

I know it's my Endometriosis. We know that a woman with extensive masses of endometriosis can sometimes not experience any symptoms and women with very little can live in agony. Research has taught us this! The amount we have is not indicative of the pain we are in. How can my specialist not know this?!?! She's supposed to be an endometriosis specialist.

So now I don't know what to do. I've got a doctor who I know wants to discharge me because God forbid could she admit that she doesn't know what to do with me. I'm in chronic pain and barely holding down my 15 hours a week job. I've got to gi back to work next week and try to explain that my doctor found no regrowth if endometriosis, but im still in daily pain and I'm not better. How are they going to understand that? My doctor doesn't even understand. They think, everyone thinks that this surgery was going to make me better. But I'm not better. And apparently it's not even my endometriosis.

What on earth am I going to do. I'm at my wits end. Ive been in constant pain for 4 years now and I've had enough.

Please can anyone advise me of what I should do?

13 Replies

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  • Hi Fletch, so sorry you are going through this. I think a second opinion would be the next thing to do if you can afford to see someone privately that is recommended, but don't give up!

    The other thing to remember and this is not meant to be offensive as I have done this and am still learning not to do this but try not to take on Endometriosis as an identity. Don't let it own you and get some counciling if you can. the first step I had to take was stop saying when I was in pain was 'my endometriosis is playing up'. It's not mine! I don't want it, there are all sorts of tricks you can play on the mind to help yourself with the pain and make life better. When you think of adhesions change the image to something you love and see if that helps the pain. I really hope this helps you, as I said I am learning this and finding that some days are better because the mind is awesome! Endo is real, but it doesn't have to consume us. Keep fighting and

    I hope you find some help and advice that works for you.

    Big hugs

  • Oh gal I'm sorry you are in so much pain but rest assured you are not alone. At 26 I was diagnosed with endo and had a partial hysterectomy. I was told this would fix all my woes. Although I quit vomiting everyday, I still deal with bowel pain 19 years later. I did get a small 2 year break where I was back to the old me, but 2 years ago, I slipped back into bowel problems. In aug. I had a colonoskopy and all was good then I had the rest of my hysterectomy completed. I thought for sure I would be better, but still my bowels cause greif, daily. I am beginning to feel it's all stressed related. Feeling ill daily is very stressful and after YEARS of trying to cope, with endo could we all be a bit stressed that is haunting us? I am meditating, doing yoga, praying, exercising, eating very light and doing self massages by rolling around on a tennis ball. After 4 days I think I can feel a small change for the better. I know it's so hard but keep your chin up. Cry when needed and laugh as much as possible. Most docs give up on me too, so it's up to us to find our peace. Sending loving vibes your way.

  • Hi sorry to hear your in so much pain there is a disease that is very similar to endo called adenomyosis but it is in the wall of the womb doing what endo does each month, we all know scans cannot see endo but i had a an internal scan done and it showed fluid filled pockets in and on the womb wall i had dull period pains all the time but when i was due on it became chronic pain that had me doubling over at times, endo and adeno can run alongside each other good luck and hope you find a way to alleviate the pain

  • Hi Annelou, I was diagnosed with his too with an internal scan. I hope you have found a good solution. I find without treatment the pain is severe but with treatment mild but chronic. Do you find the same?

    Big hugs

  • Hi ive had a total hystetectomy about five weeks ago it was the last solution for me and yes its realy painfull the coil didnt work, i had a endometrial ablation done and that made symptoms worse so hystetectomy was the only option for me but because my ovary was covered in endo he removed them so now the drs are trying to get all info before they make a decision about hrt as that may feed any endo left, however on a positive note i feel so much better no longer in constant pain

  • Oh I am glad you have no more pain. I had endo on my Ovary too, but last ultrasound Gyni said it looked like it had gone as Ovary is normal size again and there is no liquid showing. I'm trying Qlaira now for the low back pain, but hopefully I can beat this! I hope you continue to feel better and they make the right decision about HRT for you, it's all so unknown isn't it.

    Big hugs to you

  • And hugs to you to thank you x

  • Oh I am glad you have no more pain. I had endo on my Ovary too, but last ultrasound Gyni said it looked like it had gone as Ovary is normal size again and there is no liquid showing. I'm trying Qlaira now for the low back pain, but hopefully I can beat this! I hope you continue to feel better and they make the right decision about HRT for you, it's all so unknown isn't it.

    Big hugs to you

  • Gosh this is a tough one. I'm just wondering if you have adenomyosis. It's difficult to spot during surgery and maybe your surgeon isn't trained or experienced enough to spot it. I have it (the surgeon said there were signs and showed me the pictures) and like you, have a lot of pelvic pain constantly. I had a coil fitted during my lap in March and the pain I was in did gradually come down to half. I'm now trying the anti-inflammatory diet and have seen a specialist. A girl on this site recommended the book, "Take control of your endometriosis" to me by Henrietta Norton. I'm going to meet Henrietta for the first time on my next appointment. Since being on the diet for 8 weeks I've already managed to reduce my pain naturally by a third. I'm on tramadol still but less than half of what I was a year ago. I'm determined to shift this pain but don't want further surgery or injections. I don't know what pain killer level you need to sustain your job but maybe you need to go up a notch? It at least gives you some time. I also think a second opinion would be vital.. they can't just leave you in pain for goodness sake. What kind of doctor would do that? And may be consider the diet? Let me know if you'd like some links to the diet online. I hope you get some answers soon and try to stay positive.

  • Definitely get a second opinion. And good luck. It's hard to get people, especially doctors to understand we aren't making this all up, you must persevere and change specialists if the one you have Is not following through. I will be thinking of you as I know we all will.

    Steph x

  • Hi Fletch,

    I don't know if I could possibly advise you what to do - but I can empathise. What you have written could pretty much describe me!

    I am in almost the exact same position as you. I, too, have Endo. I have had 4 lap surgeries, including laser ablation, and radical excision of Endo. My Endo tends to grow predominantly in the areas of my Utero-Sacral Ligaments, and POD.The last 2 surgeries, I had stents in my ureters, because the Endo was so close to them (or maybe on them) and causing real problems. During my last surgery, early this year (March 2014), I also had a peritoneal biopsy.

    Following my most recent surgery, I remain in pain. I have lower back pain, mostly on the left hand side, and pain at the low front of my pelvis, going under into the groin (again, mainly on the left). I still have heavy, clotty periods. I still have an upset stomach, with cramping and diarrhoea around the time of my period. I cannot lie comfortably on my back, as this causes pain, as well as a tight pulling sensation around my belly button. I have to get up several times in the night due to discomfort, and also an excessive feeling of needing to pee.

    Despite all of this, my Endo Specialist also wanted to discharge me. He insisted, after my last surgery, that he believed my Endo was "all gone", or at least, "very minimal". He told me that he felt he had removed all my Endo, and he'd also trimmed back adhesions. On the basis of this, he felt it acceptable to discharge me. He did give me the option of coming back to him if my symptoms recurred, and he did refer me to a Gynae-Urology specialist to address the pee problems.

    So, like you, I feel I'm at a bit of an "impasse". I guess, once you are told your Endo cannot be what's causing the symptoms; or are lead to believe it's minimal, or gone; you begin to feel like you're making a fuss by saying you are still in pain. The fact that I still have symptoms REALLY frustrates me. I also now FEAR going back to my specialist, because I think he won't believe me and will just fob me off. I already feel fobbed off!

    Just like you, I have also seen a Bowel Specialist. I also see a Chest Specialist, because I get tightness and pain in the right side of my chest during my periods, which exacerbates my Asthma. The Bowel Specialist has ruled out any major problems with my bowel - he still thinks Endo is causing my symptoms. The Chest Specialist feels that Endo could be affecting my chest! So, how is it that the Endo Specialist feels I should be able to cope on my own, and tells me it's not my Endo?

    I don't really know of anything else it COULD be. My symptoms are still activated by my periods, or are worse during my periods (sounds like Endo). They are in the exact same areas as my Endo was first located (sounds like Endo). They are the same as when I first got diagnosed with Endo (sounds like Endo)... So, what's changed?

    I get the impression that some doctors simply run out of ideas! Mine told me that he was not happy to do further surgery, because of the risks. He has suggested hormone treatments, but I am uncomfortable with the side-effects. I feel that I have been discharged because there is little that my doctor can do for me, NOT because I don't have Endo. Maybe I do still have Endo? It certainly feels like it!

    I guess all I can suggest is that, like me, you stick at it. You keep a record of your symptoms. You keep insisting on seeing your specialist. You keep insisting that you believe you may still have some patches of Endo. Stick to your guns! I know this feels awful; I firmly believe we should be listened to, and NOT have to fight to be heard, or taken seriously, to get the treatment we need. If all else fails, try for a second opinion.

    And... believe me, I do sympathise. I understand how this feels, and I don't think you are exaggerating or making a fuss. It's YOUR body, and YOU know it best.

    I'm SO sorry I couldn't help more. Also, I'm sorry for grumbling here - I don't know if there's anything in my story that's of help to you. Just KNOW that you are NOT alone.

    Best wishes & good luck,

    E. x

  • Hi Fletch.

    Having endometriosis is one of the most frustrating things in the world....having Dr's who are supposed to help you, but don't, is worse!!

    I had a laparoscopy in February, they drained cysts, cut out and burnt endometriosis, as well as unstuck my bowel from my uterus.

    For the last 3 months I've been in terrible pain in the left hand side of my groin. The pain ís also in my hip and radiates down my leg. I've been to my Dr who is very nice and helped me down the road to getting my endometriosis removed back in February, and she sent me to see the consultant.

    The consultant gave me an internal, tested me for a hernia and decided that the problem is in my bowel or back. I have a herniated disc in my back, and near complete deterioration of my lower discs.

    Her suggestion was that I take a fibogel sachet each day, for fibre!!

    She was extremely condescending and I felt totally frustrated with her and her attitude.

    Like you, when you've had endometriosis and know the symptons and pain it causes, you know if it's come back. I persisted in the fact that it had to be endometriosis, she read my hospital notes in front of me and read out loud the bit where it said I still had endometriosis left on my ovaries!!

    She said that she would give me a 3 month course of prostrap injections to melt away the remaining endometriosis (even though she didn't think I had any!!) and she would send me for an ultrasound scan. And she would see me in 6 months for this!?

    6 months to wait!! I went for the scan a week after my appointment with her, as I told her I didn't want to wait for it, even though I knew it wouldn't show anything as endometriosis is too small to show up on an ultrasound, but I didn't push for the injections as I wasn't sure if I even wanted them, I don't fancy the side effects.

    Anyway the scan showed my right ovaries to be clear, but she couldn't see my left ovaries where all the pain was, as they were stuck behind my womb, probably by the endometriosis the nurse said!!

    When you know your own body, you know.

    I'm taking strong pain killers, and am in pain every single day, it is so strong I want to throw up all the time. My stomach is swollen and my insídes burn, probably from all the pain killers!!

    Do the prostrap injections not work??

    I'm sorry your in so much pain, it's so unfair, too many Dr's are ignorant to this disease and the pain and suffering it causes.

    Don't be afraid to stand your ground and push for more treatment if that's what you think you need. I'm going to request to see a different consultant and reconsider my options.

    Lisa xx

  • Thanks to everyone who replied to this post. I really appreciate all your help. I'm paying to ho and see my surgeon at her private practice next week. I going to give her one last opportunity to help me and if she can't, at least refer me to someone who can.

    I feel so annoyed that doctors are too proud to say 'they don't know". They'd rather just pass you on, hoping you'll soon become someone elses problem.

    I have the time at this private appointment to explain how I feel without feeling rushed. I'm going to explain to her how Endometriosis works! She obviously needs the lesson ;-)

    Wish me luck!

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