Laparoscopy no endo, what now? :(

Hi everyone,

I had a laparoscopy 2 weeks ago due to the Dr thinking I had Endo. I burst into tears when they said they found nothing and that I am no closer to answers. It sounds silly because I should feel happy but I really am fed up of what my body is putting me through. They told me to go back to my GP & be refered to Gastro which I have done and have finally after pestering refered me for an ultrasound too.

Since having my son a year and a half ago, I am suffering with deep painful intercourse which is ruining my relationship. I have a supportive partner but it is taking its toll. I have had painful menses since age 10 & was put on the pill at age 11 as my menses are agonising & heavy lasting about 5-7 days at times. I am now on the Implant since giving birth as my first two periods I ended up on the floor screaming and was told it was ovary pains & to go on contraception again they are now all over lasting weeks at times, dulled pain thankfully but still heavy and sore. I also get lower back pain at times radiates into my hips esp on the left as well as general awful abdo & pelvic pain. I was told I had IBS almost ten years ago the meds never worked, my diet is healthy but I now suffer with chronic constipation and can not feel the urge to urinate or pass a bowel motion until the last minute & its a dash!

I have no infections, nothing wrong from internal examination of my vagina and willing to take the next steps with Gastro & the ultrasound, but panicing masdively if they also find nothing. Its really affecting my life and my relationship and had no real discussion after the lap as I was so off it on meds & crying for lack of answers. Feel so down and lost! I have been told to also look at the specialists but tbh its so confusing, I am im the UK North East & I checked the names on my consent form and discharge letter with the hospital and it did not match so I'm guessing it was nit an Endo specialist. They were supposed to check behind my uterus and bowel but if my medicated memory serves they only mentioned my ovaries & pelvis?

Any help or advice would be much appreciated!

Xx

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  • Hi - please try not to feel distressed because you are in the situation that so many are after a first lap in what will have been general gynaecology. It really is so frightening that these consultants can have a quick glance over your utertus and ovaries then declare you free of endo. You are displaying the symptoms of deeper endo that would need methodical investigations usually starting with an MRI scan. You should be given a rectovaginal exam (fingers up vagina and bum at the same time) to locate any nodules of endo in places that might be missed at a lap even by a skilled surgeon and which would no doubt have given you a great deal of pain to arouse their suspicions. Your pain is predominantly left sided which is another sign that should ring alarm bells.

    Click on my name and have a look at my first post and the one on Pouch of Douglas endo to see what you identify with and the one on getting a referral to a specialist centre.

    You are now in a position to take control of this and have many centres to choose from where you live. I will pm you. x

  • Hi. I feel for you in this matter. You are doing right by following up with this. I would definitely get more tests and when requesting an mri make sure you demand dye contrast as a typical mri is essentially wortless in showing everything. Ive had many due to my issues also and the xray physicians told me the above which saved my life when I had peritonitis a life threatening infection.you know your body and so many physicians dont listen and can also overlook things to say you had nothing there so why do more...make sure you do more and demand until you get answers.endo is no laughing matter and I suffer greatly but theyre may be something more going on as we have so many organs and issues.mine turned into the above infection which cost me my intestines and many organs to be bypassed, so follow up and I wish you the best and keep us posted. :-)

  • Have you had thyroid blood tests done ?

    because an underactive thyroid can cause many of the issues you are dealing with

  • Thank you all for your replies. Im glad I am not alone in this and have some support.

    Lindel - I had never even heard of Endo when the gyne Dr told me thats what she thought it was. I was convinced I had a prolapse but two Drs have ruled that out but I thought an ultrasound will show that and other things like fibroids. I did ask for an MRI scan but she sort of dismissed that, none the less if the ultrasound and Gastro Drs find nothing I will then push for an MRI and information on a specialist in Endo. I will be shocked if this is bowel related they were trying to suggest Chrones or Colitis - I have friends with these and the symptoms can be so nasty usually with a big drop in weight plus diarrhoea and sickness not really constipation so I am not convinced. I was saying in my previous post its got me really confused how to go about getting a referal to an Endo specialist - theres supposed to be one at the hospital I had my Lap so its put me off going back there. Do the specialist Drs cost? Id have to save up. They were supposed to check behind my bowel etc plus I find it annoying no one took a biopsy while they were in there, I mean whats the harm while they are there, do these Drs just think theyre going in there to waft a camera about or actually help peoples lives! I wasnt even under for that long went down at 9am was probably out by 9.15am & woke up bang on 10am. So by the time they stitch you I had two incisions they couldnt have possibly done a thorough enough job investigating.

    RedRuby900 - I will be demanding an MRI test after the ultrasound and Gastro Drs find nothing. Im hoping even at Gastro they suggest it themselves! Ill end up going mad if I end up with an infection as if they dont do a good enough job of thinking its in your head enough.

    Reallyfedup123 - I had my thyroid tested years ago was normal thats when they said oh well it must be IBS. Gave me these tablets that just didnt do a thing and sent me on my merry way. I was trying to say to these Drs its not even the same pains and things going on as when I was told it was IBS and even then I think it was a total cop out.

    Xx

  • Hey hun

    Totally understand where you are coming from.

    Defo need an mri , mine showed endo in my ovaries which my 1st lap missed as not visible to naked eye.. (or atleast an unskilled doctors eye ;p )mri will also show adenomyosis, which I don't think they can see in lap. (It's like endo inside the muscle of the womb I think)

    During the lap they should have taken biopsies as not all endo visible to naked eye. The samples get sent off to histology to examine if endometrial tissue is present.

    also depends on how skilled your surgeon is. My first lap doc only found endo on bladder. Second lap , (only 4 months later ) found endo on bladder, uterovesical lining, pouch of douglas and what they found in ovaries on mri.

    And...they may have missed endo even in my 2nd lap as due to my ongoing symptoms I may have ureter endo..or endo near my kidneys!

    I would ask for a second opinion, or better yet- ask to be referred to the specialist endo centres.

    I would agree with others here likely you have endo ,especially likely is pod endo. Defo read lindle post on pod endo.

    don't give up!!!

    Xx

  • Hi retti,

    Don't lose heart and be prepared to battle.. I've just had my 2nd lap with a specialist (2 years after my first) and even the specialist said at first everything looked ok but when he digged a bit deeper he found widespread vesicular endometrioc spots mainly on the uterovescular fold...

    Also a 1cm deep infiltrating nodule in the left pelvic sidewall under the ovary right over the ureter which he resected with wide margins.. There was also a smaller deep infiltrating nodule on the right utersacral ligament and pararectal fossa was resected..and a small burnt match spot over the pouch of Douglas which was resected..

    On my first lap with a regular ob/gyni he said there was only 2 spots on my ureter (minimal) so yes you need to be assessed by a specialist team....

    I know exactly how you feel as I have been there just get the info you need ie/ your nearest endo treatment centre I would call them and explain your predicament and if they are happy to take you on then go back to your gp and ask them to refer you straight there it will save you a lot of time and pain.

    If you would like anymore information or guidance please feel free to pm me. X

    Big hugs yazza. X

  • Hi, I am in the exact same position as you, all the same symptoms. I have been from gynaecology to gastroestarology and now awaiting referral back to gynaecology.

    Keep your chin up and don't let them fob you off or that it's all 'in your head'.

    Best of luck,

    Sarah😀

  • You sound a little like me. Not having the urge to go potty. I would definitely get a new doc and tell him where u think endo may b hiding. In meantime use probiotics that go in the fridge at least twice a day. U may have nerve interruption. Were u in a recent accident of any kind? If u were try a chiropracter and have the electrical unit they have, used on your lower back. I had the same problems with not feeling urges at both ends. U need a good gyno that specializes in endo. Find a center, u may have to travel as I did. It took me 20 yrs to get my health back. I also have I.B.S. u have to watch your diet extremely well. No raw vegetables for sure. Also, eat gluten free as much as possible. I think synthetic b.c. pills are bad but if u have endo u need the progestin so endo tissue does not proliferate. Get a new doc sweetie. I went through15 between gynos and urologists.

  • Thanks everyone! Should I be getting the MRI scan from my GP locally or from the specialist? I had heard of adeno too so thats why I wanted the MRI but Ultrasound it is - cant hurt though ill be back just to say well that was pointless so time for an MRI! I already eat fairly healthy have changed bread to wholegrain, pasta and rice to wholegrain. Always make healthy home cooked meals lots of vegetables - odd snacks and a takeout maybe twice a month. I honestly could eat more fruit but when I was pregnant had a mass craving for apples so now the sight of them makes me feel sick. I also drink water everyday rather than pop. I do have fresh orange now & again as the Drs said itll help like a laxative. Also gonna get this contraceptive stick in my arm taken out as read if your having a Lap done the hormones can interfere with the results - no one told me this pre op! Keep me up to date with your fight ladies - im putting a time limit on this though I may even refuse to leave the GP surgery until they refer me. So I have accepted the Gastro & Ultrasound referral but if they find nothing then they'll need the police to remove me from my GP surgery haha. The thought of getting to '2 Years' of no sex life... Not happening at all!!!

    Xx

  • Oh and also no not been in any accidents :)

    Xx

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