The never ending saga

Hi all,

New to this forum but not to endometriosis, cut a long story short:

1. Excruciating pain since periods started at 15, heavy bleeds, inability to function, long and drawn out cycles used to be up to 14 days sometimes. Bleeding through clothes, bedding, pale skin loss of appetite all became very normal.

2. Diagnosed at 21 would you believe after being told for years I just had bad periods, breaking point was when I went to the bathroom and pulled the towel rail out of the wall with screws in agony whilst trying to make bowel movement.

3. Scared to number1 or number2 during period it was agonising.

4. Scared to go out as I would often go through clothes despite using tampons and towels at the same time.

5. 4 laps later and periods being stopped for some time ( which started a whole new set of symptoms) biggest one not feeling normal without bleeding and a constant bulge from bloating every day oh yes and pmt didn't go away even though I didn't bleed.

6. Now 31, 5/6 years since last op and it's worse I guess with age it will be migraines, pelvic pain, strange coloured bleeds, fatigue through the roof and now the fear of infertility every month is painful in different ways. Due back to gynae in sept who will say you need to get pregnant to which I will say but I can't!

7. Summary - you are not alone, a strong independent women that just wants to get through each month without having to feel like my insides are destroying me. My body doesn't support my mind anymore and it's so hard to be a. Understood and b. Helped.

Just wanted to share with you all, your not alone and it's so hard and I have concluded that if you don't have it you really won't understand. Amount of times I've heard yeah I have bad periods too they last 4 days I've wanted to scream! Hope this brings someone some comfort, somewhere.

Xxx

12 Replies

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  • Hi - why hasn't anything been done in the last 5-6 years and where are you in the UK? Where was your endo found and what was done last time?

  • I had relief for the first 3/4 years after the last opp then came off the mini pill and slowly but surely it started to rear its ugly head again, personal circumstances and I guess denial for a long time hoping it would just go away. It is a physical disease but the physiological impact it has is deep. I'm in Yorkshire and was confirmed with severe Endo at 21 I'm now 33 and trying to conceive which is proving difficult. The growth was all over the uterus and womb, the symptoms are just like they used to be in expecting the gynae to confirm this and possibly result in another laparoscopy this year. The one thing I dreaded doing again but to gain quality of life again more then anything else this feels like the only option. Currently life is hard weeks off work every month and bed bound isn't something I can keep doing anymore, so no more denial I guess.

  • Hi - a lot has moved on since your last lap so be sure you are operated on in a specialist centre next time. It sounds highly likely that you have rectovaginal endo affecting your bowel and this must only be dealt with by a specialist team. You are well supplied in the north. Click on my name and have a look at my post on Pouch of Douglas endo to see what you identify with and the one on how to find a specialist. Endo is autoimmune related so the fatigue and inability to function are very much to do with the immune system. My neurological function was pretty much wiped out. x

  • Thank you lindle that's really helpful. I'll look into your suggestion still got a two week wait before seeing the gynae.

  • I cannot believe I have lived with this condition so long and this is the first time I've heard of pod Endo and can completely sympathise with the feelings and symptoms. What I don't understand is why none of my gynae said picked this up. The pain going to the bathroom was the biggest reason for my referral alongside lengthy and painful periods. Thank you so much for opening my eyes to this and I will be discussing at my next appointment. Do you know if thus type of Endo effects fertility also?

  • Hi - the main problem is that general gynaecologists are obstetricians who will tend to concentrate on the reproductive organs and how endo affects fertility that way but next to the tubes and ovaries the POD is the next most common place endo is found. Sadly it is the most missed as it can look normal to the inexperienced eye with endo deep beneath adhesions. The many ways endo affects fertility are poorly understood. The most obvious way would be blockage of tubes or disease of the ovaries, but hormone imbalance has a huge part to play as it can stop you ovulating or cause progesterone resistance that means your uterine lining may not be able to hold on to a fertilised egg. The length of the cycle can be manipulated too which can affect the luteal phase of the cycle - the time between ovulation and your period - that is necessary to maintain a pregnancy, taken as a minimum of 10 days required. Now endo is known to be autoimmune-related other factors are becoming apparent such as autoantibodies to aspects of normal fertility. Essentially it seems endo does everything in its power to create a hostile environment for pregnancy to occur. Having said that lots of women with endo have successful pregnancies and it does seem likely that infertility will increase as the disease gets more established or is poorly treated. With regard to rectovaginal nodules the evidence is that these do not seem to adversely affect fertility but peritoneal endo does seem to and excision of this, the usual form of endo, is recommended prior to trying to conceive, as is excision or drainage of endometriomas depending on whether natural or assisted reproduction is planned. Have a look at the ESHRE guidelines that give the evidence for treatments relating to fertility:

    Section 3/4: eshre.eu/~/media/Files/Guid...

    Patient version - part 7:

    eshre.eu/~/media/Files/Guid...

    x

  • Blimey I always thought it was the other way around Linda, Gynae first and obs as an 'add on' !!

  • The basic training is obs/gynae which is why they are generalised. x

  • Please advice

  • When qualified doctors decide to go into gynaecology it is combined with obstetrics so it is a very wide umbrella and considered generalised rather than highly specialised. So an obs/gynae only deals with endo is a generalised sense and is therefore not usually experienced enough to understand it in the way we need them to unless they decide to sub-specialise in it in which case they will probably be in a centre. As more centres get set up the endo knowledge of general gynaes is likely to get more and more diluted.

    en.wikipedia.org/wiki/Obste...

    gmc-uk.org/education/obstet...

  • Hi lindl

    Following your advice have come across Dr trehan at the spire a specialist in dewsbury. Considering I already have an Nhs referral coming up in September I think trying to get the go to refer outside my postcode is going to be a challenge after a really trying day in pain I am now considering going private if they can get me in. Interesting that when I was given the option of choose n book the spire didn't even appear and I thought postcode referral was long gone.

    In desperation I did call the surgery today and I am expecting a go call in the morning, any advice you can give would be appreciated.

    Thanks

    X

  • Hi - the specialist you mention is private only which why it doesn't come up. If you went private to an initial appointment you would have to have surgery private too which could be as much as 15K or more. There is no problem at all in cancelling the appointment that is scheduled for November. You have had 4 laps already in general gynaecology which have probably contributed to the unresolved situation you are in now which in itself indicates you have severe disease. This is therefore grounds to be seen only by a specialist centre and another referral to general gynae would effectively be against protocol. I should tell the GP that you have only just become aware of specialist endo centres that have been set up since 2010 to ensure that women are not treated inappropriately in general gynaecology and since you have already had 4 laps and now have severe symptoms suggesting endo affecting the bowel you will be requesting a referral to a specialist centre and will arrange an appointment. You can then prepare for it and copy everything such as the BSGE list and the NHS contract to take with you. x

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