Controlling Endometriosis in the Early Stages

Do not have a period. Simple. Each bleed awakens the Endo and leaves scars. Endo are blood pockets that bleed alongside each period we have. I'm 37 and have no children - as yet. I would like to have children, but my periods over the last 20 years have left my uterous/womb scarred very badly. Had I stopped my periods earlier in my life, my uterous/womb would be in a better condition to carry a child. An egg needs a soft surface to bury itself in, not a rigid one. Unfortunately,

I wasn't diagnosed until Sep 2012 despite complaining to my doctors since my teens. When diagnosed last year, even at that late stage I wasn't told that my periods were causing me more damage. I read about it on You Tube just before I had a laparascopic op in November 2012!

I put up this message so that our young ladies who have been lucky enough to have been diagnosed early, can take heed. I had no-one to tell me in my late teens and 20s that my periods were making my condition worse. My doctors told me I was just unlucky to suffer from such bad period pain. I had the choice to be a mother throughout my 20s but I wanted to wait. Had I known about my health issue, I would have had a child at 27/28, prior to 30 anyway as I was in a stable relationship at that time.

Please note though, we are all very different. I have severe Endo with bits and bobs stuck in places. Whatever pain you feel, make sure your doctors know about it and can act on it sooner rather than later. Make them listen. Only you can feel what you feel.

11 Replies

oldestnewest
  • I'm 21 years old and awaiting my first lap. I suffer with horrific periods. This advice is really useful for me to know. Children is a priority of mine and knowing my periods could prevent this is quite scary! these will be questions I will ask when I have my lap. Think you for explaining endo like this I still don't fully understand!!!

  • Hi Natalie, thanks for your reply. I don't wish to scare you! I just want you to be aware of the dangers of leaving having children at a later stage in your life if you have endometriosis due to the scarring it can cause. As I said, everyone is very different and some women with endo still go on to have many children. I however, will have difficulties having children because my endo was diagnosed too late and has stuck ovaries and fallopian tubes and all sorts together on my left side. I must start a blog to diarise! What are your symptoms, sweety?

  • Ask any long term sufferer of endo, where diagnosis has taken many years. Research indicates the average diagnosis time for confirmation of endo deposits is a staggering 7 - 10 years! By that time as I can confirm endometriosis and often scarring called adhesions can affect different pelvic organs ie the adhesions from endometriosis had glued my fallopian stump (previously removed due to endo damage) to my bowel and ovary to bowel the other side plus had moved into my stomach.

    There is rightly alot of talk about endometriosis but little mention of the scar tissue that often accompanies this condition, which in itself can glue adjacent organs causing pain. Endo lesions cause inflammation and response to this can often be sticky spagetti like (filmy adhesions).

    Early diagnosis by way of Laparoscopy is the only reliable way of confirming this. Early treatment is vital. One problem remains which is each surgery can often cause more scar tissue in response to invasive surgery. That is why minimally invasive laparoscopy and possible hysteroscopy is always better than open surgery. Of course even laps can cause some scarring but is the better option and the most efficient less invasive way to confirm it. Gps and Gynes seem to be treating it at the early stage with Zoladex type injections into the stomach/pelvis monthly to send a patient into temporary menopause thus starving oestrogen which feeds the endo. When a woman is menstruating oestrogen levels are high. By reducing oestrogen in theory it stops the endo from proliferating and hopefully spreading to other organs and producing more scarring. The older method was incredibly slow diagnosis and years went by before they found it. By which time it had become a bigger problem! In the past when they found it they were quicker to perform more invasive surgery which they now know can wreak havoc on adhesion formation which can worsen the pain longterm. If left untreated or the early surgery failed to get out every tiny deposit of endo and separate with adhesion barriers the scar tissue, the endo and subsequent adhesions can and often do come back! It is always best to have an endo adhesion specialist gyne from the start.

    In the past far too many suffers had repeated surgery performed by gynes not specialised in endo and adhesion problems and even registrars! It seems that many women suffering from this condition in past years where diagnosis was incredibly slow and treatment inadequate (ie not all endo removed from the start) went on to have years of pain and problems and often arrive at the end of the road with no other option due to inadequately treated endo and adhesion damage but to have a radical hysterectomy downline with possible bowel ressection if bowel involved. So early eradication by a specialised endo gyne is key and Zoladex is often now used in early stages to hopefully stop it in it's tracks. If Zoladex with hrt addback (often given together) fails then apparently it is likely to be adhesions the culprit of ongoing pain.

  • Hi Juleyanne, thanks for that.

    Your case sounds similar to mine. I've only just found out that my left ovary and fallopian tube are tethered to the back of my womb, together with parts of my bowel. (I suffer from IBS also). I've been told I have 'frozen pelvis' and am about to have a sigmoidoscopy (where they look inside my large bowel to see if the endo has penetrated into it). This Sigmoid is worrying me due to the resection you mention above! The initial test I had last Friday where they blew air into my bowel hurt pretty bad. I'm sure they'll need to blow even more air into my bowel during the sigmoidoscopy and I just hope my bowel does burst! It feels so weak and hurts to pass wind during my periods. What are my chances do you think?

    Although I need to know if the endo has spread to my bowel, I don't want to jeopardise my bowel and wear a bag as a result of the sigmoid. Your advice please?

    Can you let me know exactly what you're suffering from and what treatments you've had?

    Oh, about the painkillers. I've put in another post that Tranexamic Acid and Mefenamic Acid tablets have done me the world of good! They have given me my life back during my periods. My stomach doesn't swell as much, the trapped wind eases it's way through with little discomfort, I can urinate and pass stools without gripping the side of the bathtub in excrutiating pain, I can actually touch and massage my stomach and don't get as many cramps that used to stop me breathing until it passed. The pain was terrible but these tables really really helped me.

    Thanks

    M1ssy

  • No your not scaring me haha! my symptoms are very painful intercourse and very heavy bleeding after each time. I suffer with very bad acne, painful periods where I have contraction like pains that can take my breath away!! I have very heavy periods, have been on the pill but I bleed constantly whilst on it. when i was examined last week the doctor couldn't examine me as it was far too painful but she did say she could see a lot of blood. I also suffer really bad with tiredness, I'm always asleep!! just waiting for my letter to tell me when my lap is I'm going private not on nhs

  • Glad to hear it :)

    You bleed heavy after sex? Is this when you're NOT on your period? If so, you definitely need that Lap, and maybe an MRI as the Lap won't allow the consultant to get to everything...as in my case, they couldn't get behind my womb as it's stuck to my bowel.

    I hear you about the pain taking your breath away. What painkillers are you taking? Ask you doc about Tranexamic and Mefenamic Acid tablets. One hits the pain and the other cuts down the bleeding. They work fab for me and only wished I knew about them years ago!

    As for the heavy bleeding, you may have fibroids that bleed like crazy when you're on your period. As I said, the tablets above have helped me with the blood flow.

    At tender 21, I'm so glad you're having a Lapo now to see the extent of the endo. I had my Lapo on the NHS...it was okay, but I will take advice from Juleyanne re any further ops I have as an Endo specialist is required here, not a Gyno.

    Phone your doc re the painkillers so you have some help whilst waiting for the op.

    I've just tried to look for a video I watched on you tube last year (wished I'd saved it). The guy on there was great and explained so many things, including the thing about each periods leaving more scars. I'll keep looking and forward you the address....

  • yep heavy bleeding after sex and nope not on my period! each time Im on the toilet for 15minutes with blood coming from me and it's very painful too.I do suffer with very bad bloating everyday too, sometimes I can look 6months pregnant! I will look into those painkillers as they might help! yes if you find the video let me know.just want to be diagnosed now, because I know something isn't right!

  • Natalie this website might help you

    clearpassage.com/the-role-o...

    if you hadn't seen it yet.

  • As part of many investigations over the years which resulted in confirmation 'eventually' of endo and adhesions. I also had a Sigmoidoscopy from memory this is examining the lower part of your bowel. This was done by a Gastroenterologist to rule out problems with my bowel. I have not had a Colonscopy as they felt my adhesions were too extensive and it would be painful for me and a slightly greater risk of perforation was possible where adhesions my have kinked my bowel. So they opted for CT scan which was straight forward and completely painfree. This a few years after Sigmoidoscopy picked up something I wasn't expecting at all - Diverculitis Disease and small Hiatus Hernia to add to my endo and adhesions history! Sigmoidoscopy involves a small thin tube with a camera on the end being gently negotiated up and round the slight bends of the bowel to have a look at any potential problems, if there are any! It is a little uncomfortable but not really painful and quite often they allow you to see the screen (if you wish) as the procedure is in process. It does not mean you will later need surgery at all. It is simply an investigation procedure to rule out other problems. As I think I indicated before, radical hysterectomy with bowel ressection is when you have a history of investigations and surgical procedures and treatments and nothing has really worked. They don't like doing radical hysterectomies in women of child bearing age unless they have tried every other possible treatment option first. This can take years I assure you! But I stand by my original advice to try and consult with an endo specialist gyne.

  • Just to add that any woman with painful intercourse or bleeding after sex (when not on period) needs a smear, or even a colposcopy, to check it's not related to the cervix.

    Natalie, it they haven't done a smear demand one, when you have these kind of symptoms they should be given regardless of age x

  • I have had a smear but they couldnt really examine me as it was far to painful and there as too much blood in my cervix for them to see! Gyno says i do have an inflamed cervix but this can be from the pill! I have never really been able to wear tampons because of the pain, so she says during my lap she will laser my cervix, and dyathermy my womb??? Ill be very shocked if she wakes me up and says there is no endo, because i know something isnt right!

You may also like...