Anyone help with these new symptoms?

Had lap in may after getting cyclical left leg and hip pain. Minimal endo was found on left side and diathermied and mirena fitted. Still continued to get the same pain so went back a few months later and they said they could understand why I was still getting pain.

Since then I have had this grumbling pain that varies in severity and is on/off. Mirena has stopped period which is good, but pain has still continued in a vaguely cyclical pattern. Only now I seem to be getting it on the right side as well. Today it is BAD! The gynae at my last apt tried to suggest it may be constipation that is causing/exacerbating it, but today I got the pain immediately before a bowel movement and the pain was excruciating into my right groin, pelvis and bottom. But it was not a constipated bowel movement iyswim? When I had finished I had heaviness and pain in my bottom and it felt like there was still more up there, so I know this is disgusting but I put my finger up there, just because the pain was so intense if there was anything up there I needed to get it out. Basically I can feel a big mass in the front wall pushing in to my rectum that was tender to touch. I know they said I had a retroverted uterus, and I wonder if this could actually be causing obstruction in my bowel?

What should I do? I only had my lap in may and saw my gynae in August and it seemed they weren't really in a hurry to do anymore at this stage. What else could my gp do?

26 Replies

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  • Sorry that meant to read the gynae couldn't understand why I was getting pain - they dismissed me as they said all the endo had been treated.

  • Hi

    I dont know if I can really help, but I was too dismissed few months ago with mild endo that was apparently cleared.

    BUT... my pain on the right pelvic area was exactly the same as before the lap.

    They told me before they dismissed me that it is all in my head and I should see neurologist etc.

    Of course I didnt leave it like that, I went for 2nd and 3rd opinion. Both 2nd and 3rd gynae agreed with each other, by only seeing my 1st lap pics they told me that endo spots were left untreated.....you can imagine how furious I was with the first doctor!!!! :/

    All I'm saying is that in many cases they dismiss us when they are ignorant or confused on what to do next.

    I would suggest you to have a fresh start by finding a new endo gynae specialist and write down everything that is going on so you can tell him the whole story.

    Jo x

  • Thanks. I have suspected this. I went to a hospital that I suspected would be crap because unfortunately I am a medical student at the better hospital! But think I am going to go back to gp and asked to be referred to an endo centre a little further afield. Something is not right and I don't want to just put up and shut up any longer!

    I think my gynae was implying I was making it up but why I would do this I don'tknow. I have absolutely nothing to gain by lying, Ian a busy medical student and mother, so it is not as though I can lie around looking for sympathy even if I am in intense pain. I just have toget on with it.

    It's funny but every medical text book I read says that endo is a chronic condition and that the grade often has no correlation with the level of pain, yet my gynae keeps repeating the mantra "you had MINIMAL endometriosis that was treated" so can't understand why I am not completely cured. Sometimes I wonder even they have a clue what they're talking about.

    Thanks for your response, hope you continue to get good treatment. X

  • have either of you discussed the possibility of adenomyosis with a consultant? I've had 2 laps, they've only ever said they found a small patch of endo but because the medication I'm taking has calmed my symptoms right down they came to the conclusion that I have adenomyosis which is endo inside the muscular wall of the womb. I would definitely go back and see your GP medicmum. Adenomyosis is apparently more likely to occur in us ladies that have have chlldren, my problems got a lot worse after having my son which, again, is quite common with adenomyosis, here's a link to a website I found helpful...

    endometriosissurgeon.com/Ar...

    This is not something they can see in a lap which is why I had to go through cognitive behaviour therapy and IBS treatment before they took me seriously! Good luck girls and I really hope you find a reason for your pains xxx

  • Thanks miss. Would they not be able to see adenomyosis on an ultrasound scan though? I had one if these before my lap and they didn't see anything abnormal apart from free fluid probably due to the endo. I'm guessing they would have had a good look at the wall of my uterus as they were looking for fibroids at first....

    But it is a good thought though. Whatever it was I felt earlier was very tender so if it was my uterus this could make sense.

    Isn't it wonderful how seriously our pain gets taken! If only endometriosis could've cured by cbt!!!!!

    Glad you have found a medication that worked for you, what is it if you don't mind me asking? X

  • Oh and they tried to offer me IBS treatment as well, but I have never complained of bowel problems!

  • yes me too, IBS is offered like a candy or something, if they dont know what to say, its IBS...

    My bowel is working just fine and my pain is only in the right (usually bowel symptoms are all over or on the left) and they kept giving me tablets etc , i had lost so much weight because of that. And ended up having endo, surprise surprise! x

  • Hmmmm yes, they tried to say that my pain moving from the left over to the right was my constipation "backing up"....

    Of course to accept that I was still getting pain from my endo would mean conceding that the operation they performed was unsuccessful, and clearly they weren't willing to accept that! Going back to the gp tomorrow. Luckily my gp is lovely and spotted my endo and referred me straightaway - it was the gynaecologists who were useless!

  • I take norethisterone (5mg twice a day) for 6 months then come off for a period for a week and do another 6 months). My life has completely changed since starting it. I've been taking it since July and have had 3 days of spotting. Before taking it I could just about manage to look after my kids and basic housework, spending the rest of the time either on the sofa with an electric heat pad and hot water bottle or in the bath. A couple of weeks ago I decorated my Mum's hall and lounge diner by myself (including ceiling). That should give you a clue as to how much better I am :)

    Norethisterone is a traditional way of treating endo and adenomyosis. It's just a really strong progesterone, the one they give girls who want to delay their period whilst they go on holiday. My partners boss has endo and is a qualified GP, she takes it constantly.

    Unfortunately for me these tablets make you more flexible, like when you're pregnant. I have extra stretchy joints anyway (hyper mobility syndrome) so my joints are giving me jip now....don't ya just love a catch 22??!!

    It wouldn't always show up on an ultra sound. I've had 5 internal ultrasounds now and they only commented on my thick womb wall once!!

    Hope this helps girls :)

  • Yeah there is always a price to pay! It has been suggested that I may need to try a stronger progesterone as the mirena doesn't always stop ovulation, but I suffer badly from the side effects of progesterone, namely really bad skin, low mood and libido, so yeah basically like I am pregnant!

  • I react very bad to progesterone as well, I tried for a few weeks, but the breast tenderness, bloating and emotional chaos were so bad. And the worst was that since I have very sensitive stomach, progesterone triggered the worst ever acid reflux, 1.5month now after I stopped them and I'm still on medication to calm down my stomach.

    So its a no no for me. x

  • Ah the reflux! Suffered from that badly when I was pg! Horrible. Going to docs in a minute, but but scared as the only apt they had was with a male locum - let's hope he's one of the good ones!

    I always suspected that the female gp I have seen mostly about my endo may have it herself as she seems super sympathetic and knowledgeable about it...

    I am a medical student and want to be a gp. I bet when I qualify I'llbe diagnosing everyone with endo whether they have it or not!!!

  • Lol I can imagine! But when you will be a GP please let us know and we can send all the ladies here with ignorant consultants to you! ;)

    Good luck with your appointment! :) x

  • Ok so gp didn't believe me. Said my symptoms sounded very "confusing" and he can't work it out. Writing a letter to refer me back, and said I can go back to somewhere else if I like. I could just tell by the way he spoke to me that he thought I was mental. Feel really shit now. You can get endo pain in your legs right? When I mentioned that this is where I usually get me endo pain, he said he had never heard of that before. What a prize cock. Thing is I bet my referral letter will be very sarcastic in its tone, so I will probably be labelled with the new consultant before I walk in the door. I wish I hadn't bothered now - I left the last gynae apt feeling like I was basically on my own so might as well just get on with it, but after all the pain yesterday I just felt like I should do something now. Thoroughly pissed off.

  • Ok so gp didn't believe me. Said my symptoms sounded very "confusing" and he can't work it out. Writing a letter to refer me back, and said I can go back to somewhere else if I like. I could just tell by the way he spoke to me that he thought I was mental. Feel really shit now. You can get endo pain in your legs right? When I mentioned that this is where I usually get me endo pain, he said he had never heard of that before. What a prize cock. Thing is I bet my referral letter will be very sarcastic in its tone, so I will probably be labelled with the new consultant before I walk in the door. I wish I hadn't bothered now - I left the last gynae apt feeling like I was basically on my own so might as well just get on with it, but after all the pain yesterday I just felt like I should do something now. Thoroughly pissed off.

  • Ok so gp didn't believe me. Said my symptoms sounded very "confusing" and he can't work it out. Writing a letter to refer me back, and said I can go back to somewhere else if I like. I could just tell by the way he spoke to me that he thought I was mental. Feel really shit now. You can get endo pain in your legs right? When I mentioned that this is where I usually get me endo pain, he said he had never heard of that before. What a prize cock. Thing is I bet my referral letter will be very sarcastic in its tone, so I will probably be labelled with the new consultant before I walk in the door. I wish I hadn't bothered now - I left the last gynae apt feeling like I was basically on my own so might as well just get on with it, but after all the pain yesterday I just felt like I should do something now. Thoroughly pissed off.

  • Ok so gp didn't believe me. Said my symptoms sounded very "confusing" and he can't work it out. Writing a letter to refer me back, and said I can go back to somewhere else if I like. I could just tell by the way he spoke to me that he thought I was mental. Feel really shit now. You can get endo pain in your legs right? When I mentioned that this is where I usually get me endo pain, he said he had never heard of that before. What a prize cock. Thing is I bet my referral letter will be very sarcastic in its tone, so I will probably be labelled with the new consultant before I walk in the door. I wish I hadn't bothered now - I left the last gynae apt feeling like I was basically on my own so might as well just get on with it, but after all the pain yesterday I just felt like I should do something now. Thoroughly pissed off.

  • Ok so gp didn't believe me. Said my symptoms sounded very "confusing" and he can't work it out. Writing a letter to refer me back, and said I can go back to somewhere else if I like. I could just tell by the way he spoke to me that he thought I was mental. Feel really shit now. You can get endo pain in your legs right? When I mentioned that this is where I usually get me endo pain, he said he had never heard of that before. What a prize cock. Thing is I bet my referral letter will be very sarcastic in its tone, so I will probably be labelled with the new consultant before I walk in the door. I wish I hadn't bothered now - I left the last gynae apt feeling like I was basically on my own so might as well just get on with it, but after all the pain yesterday I just felt like I should do something now. Thoroughly pissed off.

  • Sorry, I have no idea why my phone posted that a million times!

  • Hi I'm sorry to hear that about your appt. Unfortunately it is so typical to deal with ignorant docs when it comes to endo.

    When i have endo pain in my right pelvic area it radiates in the right hip and gradually in my whole right leg. Since nerves are involved it is absolutely normal that this happens.

    Tell your doctor to post a question about leg pain here and he will see how many positive responses he will get!!! i'm getting so angry with him and all of them of the same kind!

    Dont be so worried about the letter, my first gynae (that he made so many mistakes during my lap that i will ask for compensation) wrote such a sarcastic and stupid letter when I asked to be referred to another gynae. But the second gynae is brilliant and he didnt even check the letter as he wanted me to tell him the whole story.

    Get the referral and find a great endo gynae :) x

  • Thank you for your kind response. I hope the next apt does go better. I'm going to try not to think about it til I need to. I end up getting so stressed before each apt, and then if they don't go so well it is so deflating.

    Tbh I had never had a problem with my gp. Every time I went they took my symptoms very seriously. I didn't want an op at first so they helped me manage it medically, then when I finally decided I'd had enough of all the painkillers they arranged the referral quickly. They treated it as endo even before my lap so never doubted my symptoms. It is since I've had it diagnosed surgically that the gynae and gp I've seen since have seemed a bit dismissive of my symptoms! How ironic. I suppose I was luckier than some in that at least I got a diagnosis reasonably quickly, although to be fair I have pretty much had horrid periods since my teens.

    Thank you for listening and believing me! I try not to go on about it too much to my partner and family, though I do admit I've had a bit of a cry on the phone to my mum tonight. I sometimes even wonder if they really get what it's like, as I don't always mention the minor background pain so the only really hear about the crises. I hope they believe me, they might think I'm a bit of a mental too! :(

  • Your mum and partner are the persons that they suffer seeing you being in pain, cause the love u. dont doubt that, of course they cant know what we feel, but i know from my hubby that he feels lost and totally "useless" when im suffering and he cant do anything about it.

    As for what you said for your gp and gynae, it was like that for me too. The first gynae he said straight away to do lap to get to the bottom of this, but after the lap when i continued to be in endo pain he wouldnt even hear what i was saying. totally different attitude!

    i guess there are some docs that when it is getting hard and complicated they prefer to be dismissive, sarcastic or to ignore us!

    Take it easy and keep your chin up hun (this is what i try to do too) ;) xx

  • Hi,

    Adenomyosis can be seen via colour doppler MRI

    The bright red and white 'throbbing' areas are the adenomyosis 'tumours' leaking blood into the walls of the uterus. Many clinicians STILL do not know what adenomyosis is, what the symptoms are or how to treat this cruel condition.

    Women are still being put on anti-depressants and being given pain killers and/or hormones for something that needs to be removed.

    That is why I set up the Adenomyosis Advice Association up and why the clinicians globally are using the site and are actively following the Facebook and Twitter pages to look at ALL of the feedback to understand why and how it comes about. For further info please feel free to visit adenomyosisadviceassociatio...

    Danielle

  • Thanks for your informative post. I did ask GP if it might be adenomyosis, but he says it would have been visible on ultrasound. :(

  • hi there, i have similar bowel related problems and i can totally identify with the feeling of a blockage or obstruction. i was diagnosed with rectal prolapse and had part of my bowel removed. however i still have the same symptoms as before and am currently pursuing endo related gynae help on this (although its slow progress). I have identical pain to you as you describe in the bowel region and i know having to use your finger is not pleasant and painful, and definitely not normal so you are right to try and find out whats wrong. im sorry i cant offer the answer but you are definitely not alone, and im very much in the same place as you right now. if i make any progress i will let you know. i would definitely be interested to hear if you make progress too:) xx

  • Hi all - I had a ultrasound scan and a transvaginal scan and these did some up Adenomyosis.

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