What are your symptoms? Had endometriosis 20 years, only diagnosed last summer!

I first started getting endometriosis pains when I was pregnant at 21 (20 years ago!!) ultra sound picked up a cyst, so they presumed it was that causing the pain. It was only when I was being sterilised last summer that they found the endometriosis, and removed the dermoid cyst. I've been to A & E twice over the years, lost count how many times I've been to the doctors because of pain too - was even told it was IBS and went through a colonoscopy! I also had 2 previous laparoscopies where they tried to drain the cyst (this was years ago, and draining a dermoid cyst wasn't going to work as it wasn't fluid filled!)

I get left and right sided pain, which sometimes radiates down my leg to my knee. I also have extremely painful periods, where the pain is also felt in my hip and back and general pelvic pain. Recently I have been getting vaginal and rectal sharp, shooting pains which they believe to be nerve pain. I was also getting very numb when sitting down, but Amitriptyline seems to have helped with that. I also get excruciating pain sometimes before a bowel movement, or with gas. Nobody seems to be able to understand that one!

I was told 5 years ago that I have chronic fatigue syndrome, which has really impacted on my life. The consultant/surgeon told me that it has nothing to do with endo, and just 'getting old'. Really?! I have seen it mentioned so many times that endo can cause fatigue?!

I'm due to have a consultation this evening about having a Mirena fitted. I have had 2 in the past, which did help although at the time I didn't even know I had endometriosis and was using it as contraception. I'm undecided whether to have surgery yet - but the pain is now so frequent since being sterilised... However I'm so afraid of it not helping, or making things worse!

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  • I was diagnosed last year at 38 after (in hindsight) having symptoms from my first period at 13. I had always been told my heavy bleeding and pain was normal and given mefenamic acid. I didn't have fertility problems but did have problems during pregnancy - with my first baby my waters broke at 32 weeks (which I've recently learned is more common in women with adenomyosis, which I have) and in my second, I had bleeding and contractions all the way through the pregnancy although he was term.

    My symptoms have worsened over the years and at this point are excruciating pain during the first day of my period, like something has gone bang in my pelvis. It hurts just everywhere. When this eases off I have continuing pain for 7-10 days which feels like the awful bruised soreness you get after a really bad stomach bug. The pain would also be in my pelvic floor, lower back and down my legs. I would feel like I had been kicked up the backside by a horse. Heavy bleeding to the point where I have accidents, lots of big clots (bigger than a 50p), and periods that would last over a week, with several days of dark brown spotting before they start. Pain during sex. Pain when I pee. Cramping bowel pains, chronic constipation, passing mucus and blood from my back passage. Anaemia. Fainting. I couldn't get diagnosed until I started having to go to A&E for pain and was always told it was IBS and my period pain was normal.

    By the time I was finally diagnosed the disease was very severe and the lesions very large, one measuring over 3cms (this is a lesion, not a cyst :/). I have rectovaginal endo, bladder endo, adenomyosis, endometriomas, hydrosalpinx in my right tube, kissing ovaries. It's just everywhere. I am due to have a hysterectomy and BSO in 3 weeks which fingers crossed will finally give me some relief.

  • Gosh that's a long time to be suffering with no answers and you've been through a lot. Have you seen an endo specialist yet?

    All the symptoms you mention I can relate to, at its worst walking to the bathroom is agony with the pain in my hip, back, legs and knees. Are you any type of pain killer?

    Could they tell you if the endo was on your bowel? Has anyone mentioned the endo diet to you? Various foods can irritate and cause additional pain, I've been doing it for a month and have noticed a difference in the pain which was highlighted on Sunday after a meal out - thought I had chosen something ok but within an hour I was in a lot of pain which lasted 24hrs.

    I'm afraid I've no experience with the coil.

    What surgery are they suggesting?

    I was told tiredness is all part of it, feels like your walking through toffee! I battled with it to start with but I give in and go to bed now in the hope I'll have a few good days afterwards.

    Good luck xx

  • Hi Tillyfloss, thank you for your response. I have seen several consultants at the gynecology unit, including the surgeon who did my sterilization and cyst removal and I'm due to see him again in April. I don't know if they are specialists though in endometriosis?

    I'm trying my hardest not to take too many painkillers - but usually back down at some point during the day and take either paracetamol or/and codeine. I am taking Amitriptyline also, but I don't think it does much for the pain on the endo, if anything.

    I don't know if the endo is on my bowel, but it does say in my discharge note from my cyst removal/sterilisation that I have peritoneal endo in utervesical fold (which looking at a diagram is between the uterus and the bladder), endo in right uterosacral ligament (which looks to be between the uterus and the colon which might explain the horrendous pain before going loo/gas!?) and endo over left ureter with deep lacuna (whatever a lacuna is?!) and uterosacral disease. Seems there is a slight adhesion on my ureter. Wish they'd write it out in a language I could understand ;-)

    Suggested surgery would be 'full sidewall resection with ureterolysis on left' but the surgeon wasn't overly keen because of a 'small risk to ureter'. He wanted me to try hormone treatment first, and take it from there. I hate hate hate the thought of hormones (which is why I opted to be sterilised in the first place!) but feel I have no choice, if the choice is living with pain day in day out. The Mirena coil is my first step, and will see how it goes I guess!! I had the worst period pain ever during my last period, on the left side and into my hip. Can't keep on like that, for sure. Had I not know the cause, I would have been calling 999!

  • If you decide on surgery please make sure it is with a specialist at a BSGE centre. Recto vaginal ( uterosacral ligaments) endo should only be treated in these centres under NHS guidelines.

  • Thank you, will look into that!

  • Just had a search. Royal Devon and Exeter NHS Trust, Centre for Womens Health is on the list thankfully!

  • Forgot to say I haven't looked into diet much, although I did read through the list of foods that should be cut back/out. I'm vegan, so don't eat meat or dairy although I do find eating gas producing foods make the pain worse :( So try to avoid those as much as possible - but tricky!

  • Hi Sip1

    Sorry to hear this. Here is some information about endometriosis and it's symptoms.

    endometriosis-uk.org/unders...

    I hope this answers some of your questions. If you need someone to talk it through with, we have a team of volunteers on our helpline who would be happy to talk things through with you.

    endometriosis-uk.org/helpline

    Louise

    Endometriosis UK

  • Thank you! :)

  • Hi. They really don't make it easy for us to understand what's going on in our bodies do though.

    I was very lucky as I know a surgeon at the hospital I was treated at and he made sure both me, my husband and parents all understood what had happened (I was very poorly and thankfully he stepped in and took charge of my care ) but I could imagine we would of found it very different without his input and explanation.

    CodeIne might be making your problems worse it's worth asking at your appointment. How long have you been taking the amithriplyne? We have found the endo specialist very helpful both with making daily life more bearable and hopefully treatment longer term, if you can get on a nhs waiting list or pay for an initial appointment it's worth it I could of cried with relief that I was speaking to someone who got what I was saying! As a vegan you Probably eat a lot of the good foods already.

    The constant pain is wearing and makes planning things very difficult. If the pain becomes unbearable get yourself to a&e as if nothing else they should help with the immediate pain. Good luck

  • I had the coil. worst thing I ever done, couldn't move for a week went through 4 packs of heavy nighttime pads and since then my periods have gotten worse and worse as well as all of the symptoms.

  • Hi sip,

    I had to respond to your post as your situation/symptoms sound almost exactly like mine!

    I'm 35. I started my period aged 10 had severe pains mainly in my legs so bad I couldn't even walk would just cry in pain.

    After pregnancy got a bit better have since had another 2. But in the last 2 years I've had pelvic pain usually left side but also all over and spreads to my hip/back and down leg to my knee. I also get the agonising sharp pain before a bowel movement of passing gas (not all the time) I also pass mucus and have loose stool and urgency but not sure if this is connected or related to my gallbladder removal.

    I thought it must be a cyst or worse as I also have fatigue and feel got a lot. I haven't had any investigation yet for endo as I hadn't thought it could be this but I will mention it to my dr. Thank you for sharing your symptoms I really think I could have this as well, I was startin to think I was going mad as previous Drs thought I had health anxiety but my symptoms are very real.

  • Oh gosh, definitely get it checked out. I'm fairly certain had I not been sterilised, I'd probably be none the wiser and continued to be fobbed off with IBS! Let us know what happens!

  • I am new to this site and I am having a lap in a few months for endometriosis. I have the same pain that the specialist thought was nerve pain. Mine feels almost like it is very close to the skin; almost as if it needs to be inched and that it is hot. X

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