Possible Endeometriosis. Should I have laporoscopy?

Posted , 6 users are following.

Hello

I have had 'issues' for about 2 years now. I'm 37 with no children. My main symptoms have been abdominal swelling and pains (both can be extreme, the most I could imagine), rashes (mostly on my throat, chest and abdomen) and fatigue (which has been extreme the past 3 months). Lots of possible diagoses have been suggested by the docs (coeliacs, HIV, ovarian cancer, lactose intollerance, SIBO, heliobactor plyori) all have been ruled out but have all caused lots of anxiety and tests. The new one that's been brought up is endometriosis and I've been offered a laporoscopy to test for this. I just can't decide if it's something I want to go through and whether it would be worth it.

To be honest, I've been a bit dismissive of the endo suggestion as I didn't think I had it- my periods are not problematic, they're fairly light and last about 3 days. But the doc today told me this isn't really relevant and endo could be causing problems without visibly abnormal blood. 

As I was swithering about the surgery, the doctor suggested I try a contraceptive pill to see if it calms things down, which she said would further suggest endo. But I don't think I'll have time to try this first and then if that doesn't work go for the lap. 

Does anyone have a similar experience and can anyone offer any advice about whether the lap would be worthwhile?  

Just to add- I had an ultrasound which showed 2 fibroids (6cm and 3cm) and a bulky, retroverted uterus. And I would like to have a family but I'm so unwell just now, it's not a possibility so going on the pill isn't going to change much in that area. 

Any advice would be much appreciated! Thanks. 

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13 Replies

  • Posted

    A lap is what I would do in your situation. Scans do not show up endo. It will put your mind at rest and prove if you have it. They could also put the coil in at the same time. I tried so many pills they never worked.
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  • Posted

    My periods were fine all my life I just had lots of pain scan showed ovarian cyst which I had laparoscopy to remove. When I woke up I was told that my whole pelvis was fused from endo. Womb ovaries bladder and bowel and that it was that causing all my pain. Nothing showed on any scans as things stuck together. Luckily my surgeon that was removing my ovary was endo specialist and cleared as much as he could and released and I was pain free for a while but he advised to have hysterectomy and clean up of everything in a larger op because I was 39 and have children but this part was my choice. I'm 41 and though on hrt as have no ovaries fingers crossed I haven't had any pain. If tubes are blocked with endo they'll be able to clean to allow more chance of pregnancy if it is endo. Op is ok as ops go and I was back at work in 2 weeks. Good luck 😊
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  • Posted

    Hi, Sorry you are suffering sad As someone who had suffered with Endo for many yrs since Is I was a teenager actually, it does not sound like you have it but the doctor who told you that even if u do not have all the symptoms you still may have Endo is correct. I would have the Lap surgery anyway. 

    My best friend had your symptoms, fibroids, belly bloat, etc, she had Pelivic Inflammatory Disease, she had surgery to have the fibroids removed and something else but I can't remember what they did to alieviate her pain. It did help though and she had reuterous retroverted uterus as well. The only thing I don't remember her having are rashes.

    I would have the Lap as it is not a big surgery and it can rule out Endometrioisis and maybe other things too. Good Luck to you, it is not fun feeling so unwell. xo

    By the way I had 4 surgeries due to Endo, the last one being a Hysterectomy when I was 32, took me 7 years to get he Endo diagnosis, I did have a 11 yr old son at the time or I may have not went through with  the Hyst. regardless of my pain. Feeling better now but still have adhesions, always will, not having anymore operations for them, they always come back.

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    • Posted

      If you're not a doctor you can't say I don't think it is that. Your not qualified. Just say what you would do if you were in her situation. I got so unwell because people didn't believe i had it and i was making the pain up. I had it all along . It's just extra worry ontop of an already bad time.

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    • Posted

      I was just saying it does not sound like the sympton oF Endo but if you reads what Iwrote right after that I also said you don't have to have all the symptoms to actually have the disease so I recommeded she have thee Laporoscopy to find out.

      I had suffred greatly from 14 yrs old auntil alsmot my 21st birthday with 'all" the sypmtoms of Endo, I was treated like I was some kind of baby who just could not seal with pain or i was crazy or making up the fact I would vomit, get nauseus fron horrific Period pains and one time passed out in Gym class when the cramps suddenly hit me like a ton of bricks in school. My point is I know Iv'e been there, had 4 major operations, was put on many hormonal meds form 21 to 32 qhen I finally just had a Hystectomy, it always came back after surgeries and drug treatments and all my organs were stick together from adhesions. I do not think that at age 37 withall her other symptoms that it sounnds like endo but if she has the Lap she will find out, that is all I was saying..also my best friend had all her symptom and had Pelvic Infalmmitory disease so she may ask about that. soory you have been through all of this as well.

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    • Posted

      Sorry I snapped at you im just finding my hysterectomy really hard to deal with at the mo mentally and physically I've been in lots of pain and docs think adhesions are growing back so it's hit me hard mentally again. did I just have a hysterectomy for nothing that kind of stuff in my head and I'm in pain so it's all worse plus got a little girl hiring puberty dealing with secondary school and am at my illest so lots going on
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  • Posted

    I didn't start getting endo pain until my 30s after I had children. Dr's thinks it started then!
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  • Posted

    A laparoscopy is the only way to truly diagnose Endometriosis.  And, you can have Endo without having problematic symptoms; it's called Silent Endometriosis.  And can still cause havoc within the body.

    Abnormal ultrasounds may be an indicator, too.  Endo lesions/implants and scar tissue (adhesions) can pull organs out of place, and cause bloating and pain.  

    The suggestion of birth control before surgery is a conservative one, especially because you're on the fence about surgery.  If BC does calm down your symptoms, it's an indicator that hormones may be influencing your pain, which may be a sign of Endo.

    BUT, if you DO go in for the surgery, make sure your doctor/surgeon knows how best to handle removing Endometrisiosis lesions and adhesions.  It doesn't do you any good to have a surgery to have them confirm the presence of it, only to close you back up and send you in for a subsequent surgery at some later date with a specialist...Many women who had trouble conceiving were able to conceive relatively quickly after their excision laparascopy surgery.

    It could be that this is your doctor's way of confirming that you do, or don't, have Endo so he/she can move on to the next theory.  

    Recovery from surgery for me took several weeks.  I was back to work in 3 weeks, but wasn't feeling up to anything much until about week 6.  

    It's totally your decision.  And it's a scary one...Best of luck!

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  • Posted

    Thank you to everyone for taking the time to reply. Hearing people's experiences has helped me to decide what I want to do. I've also spent a bit of time researching a bit more about endometriosis. I have decided that I will go ahead with the procedure. It seems that symptoms can vary so much and really it's the only way to know for sure. It seems that many women wait a lot longer than me before they're offered a lap (through the NHS anyway) so I think I'll just take this as an opportunity, to rule it out if nothing else.

    I also have to say, when the GP was discussing this with me, she said that endo really wasn't a bad diagnosis and the consultant too was pretty dismissive about this being a problematic diagnosis but from what I've been reading about endo, it really is an awful disaease!! It's chronic with no cure, limited treatment options and has terrible life impacting symptoms, what's not all that bad about that?! There seems to be such little research into this disease and clearly doctors don't seem to know all that much about it. I just wonder how many women suffer with this without knowing? Those who do have endo, really have my sympathy. I hope that there is better understanding of it soon and a cure. 

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  • Posted

    If you are wanting to have children, then I would definitely suggest the laporoscopy.  In my case, I had NO pain, no signs of endometriosis but I couldn't get pregnant.  The Doctor said that he "knew" I didn't have endometriosis but to get the insurance to pay for it, he listed it as the "reason."  Well, turns out, I had endometriosis stage 4.  So everyone is going to be different, but it sounds like to me that a laporoscopy might give you some good information to rule that out completely. 
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  • Posted

    If you are wanting to have children, then I would definitely suggest the laporoscopy.  In my case, I had NO pain, no signs of endometriosis but I couldn't get pregnant.  The Doctor said that he "knew" I didn't have endometriosis but to get the insurance to pay for it, he listed it as the "reason."  Well, turns out, I had endometriosis stage 4.  So everyone is going to be different, but it sounds like to me that a laporoscopy might give you some good information to rule that out completely. 
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