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Endometriosis - any sufferers?(11 Posts)
Sorry this is long - but I'd appreciate help from any one with any experience of this condition.
So I've been TTC #1 for 13+ months now and I've been doing everything within my power to successfully conceive: healthy eating/drinking, vitamins & supplements, daily exercise, opks, SMEP, temping and more. The longer it has gone on, the more and more I have scrutinised my body and cycles for tell tale signs that something's wrong but never really found anything concrete.
Saturday night I got the mother of all AFs. Excruciating period cramps, couldn't sleep, felt like I needed to throw up. I used to get period cramps like that all the time when I was younger (16-21). The last time I remember getting pains that bad was when I fainted during a London production of Les Miserables and woke up in hospital. After that episode, I was put on the contraceptive pill and since then I've generally been able to get on with the day to day with some good painkillers to hand.
My biggest fear of of coming off the pill 14 months ago was that this pain would return. Luckily it hasn't, but Saturday night's episode got me thinking about it all again. So I just started googling dysmenorrhoea (as you do) looking to see if there was any more supplements I could take to ease the pain if it happened again and - quite by chance - I found an article about endometriosis.
My mind was blown by the list of symptoms. I think I've always just taken these in my stride and assumed they were normal for the time of the month:
Painful periods, heavy periods (I have to use a super absorbent tampon and night-time panty liner to last a couple of hours at work), pain during and after sex (sometimes, normally in the week leading up to AF), loss of old/dark blood (I get a weeks worth of brown spotting before AF fully happens), bleeding from the bowel (only during AF),
painful bowel movements (only before/during AF), and of course difficulty getting pregnant.
The article also went on to explain that if you think you may have this condition, it is worth asking your mum if she ever was diagnosed as it can be heredity. So, I text my mum yesterday to see if she had ever been diagnosed and to my surprise, she replied that she had and it was the reason she had a hysterectomy at the age of 33.
Now obviously my mother did manage to conceive eventually but it took her 16 months to conceive me and longer to conceive my sister. I'm not sure I can just sit by and hope for the best, so I've booked my Doctor's appointment but my biggest fear is that they will not do anything or will just put me in for the standard first blood tests when I know that the best thing they could be doing is a laparoscopy.
I just want to know what you would do in my situation - whether I should push to have a laparoscopy or if the Doctor refuses, whether I should ask them to refer me privately.
I am so certain that this is the reason I've been having trouble, like I said the rest of my cycle is fine as far as I can tell.
Any help appreciated
Sorry you're suffering, endo (and it does sound like your symptoms fit) is horrible.
If it is endo it can only be confirmed by surgery. Usually if you go to your GP and ask for a referral to a fertility consultant they will do all the blood tests first so that your consultant will have them to view. They'll also want to do a sperm analysis on your OH.
I think I had to wait a couple of months for the consult, then 4 months for the op after that, but it will depend on your area. I think cost for going Private was bout £2k, but again that would depend on the consultant.
I was scheduled for IVF 3 months after the surgery, but fell pregnant naturally before we started the cycle.
Hope that helps and gives you hope - my consultant was very positive, and told me that if there are no other gynae issues, spontaneous pregnancies are quite common after a lap for endo as it gives everything a really good clean out!
Well my appointment is a dual appointment with my OH so I'm hoping that he can put us both in for whatever tests we need. I also have private health insurance through work and can get it if I'm referred by my GP.
Really good to hear that you didn't need IVF to conceive. Did your consultant say anything about how quickly it progresses after surgery as from what I understand the condition never really goes away and just builds up again?
Also, know of anything I can do myself in the meantime? I've read a lot up on remedies but one article says a gluten-free diet can help - I'm not sure that is feasible for me, I'm already so strict with what I eat and drink, I think loosing gluten will drive me over the edge.
I got a diagnosis of endo after 3.5 years of TTC, multiple tests and scans. I meet very few of the classic diagnostic criteria (no significant pain or heavy bleeding) - but obviously infertility is a biggie! I had a laparoscopy after a scan suggested I had a blocked tube as well as an ovarian cyst.
Fortunately for me, the surgeon could remove the endo, as well as the cyst and tube. I then went on zoladex for three months, then had one successful cycle of IVF. When DD1 was a year old I conceived DD2 naturally, so pregnancy and breastfeeding must have helped, despite the single tube.
I had/have stage IV endo, so it couldn't really have been worse, but treatment was totally successful.
No GP will deny you a referral for a lap - its the only true fire way to diagnose you. (If they do demand a second opinion.)
I can really recommend going to a support group. You'll find out loads and be able to ask all sorts of questions. www.endometriosis-uk.org/find-local-support-group
I'm going through the diagnostic process at the moment (post children) and finding it slow and frustrating with the GP making me jump through all sorts of hoops and still denying a referral. As you're ttc hopefully they will be quicker about it all but be prepared to not take no for an answer and argue your case.
I'm sorry you are suffering like this, but I do agree it sounds like ends.
I was diagnosed by laparoscopy when I was 18 and told I would probably never have children. I have just finished a messy dinner with my two naturally conceived DDs.
It did take a long time to conceive (2 years the first time, 18 months the second time - miscarriage, 8 months the next)
However I had a very supportive gynea consultant and after 13 months of trying first time round he did a further laparoscopy and dye of tubes. This was the first step in establishing any fertility issues that there might have been. But he also said that the dye sometimes 'washes' the tubes and can make the following few months more fertile.
So I guess I'm saying they will probably want to do a laparoscopy, I would request a dye test of tubes too. It doesn't take much more to do and has the double purpose of checking fertility and occasionally aiding it.
Sorry if this is a little muddled, I am being pestered by my DDs but PM if you want any more information.
Thank you everyone, it's really good to know you all conceived one way or another. I have a game plan for the doctors, I'm going to really emphasise how it's impacting my quality of life (which isn't a lie) and just go through every symptom in as much detail. I'm hoping the family history will help.
Thanks again xx
You're probably already aware of this but be cautious when referring to fertility/ttc during your visits to GP etc if you're planning on pursuing private healthcare, as unfortunately a lot of the companies don't cover fertility related issues (but will cover them, however, if they're affecting your lifestyle through pain and discomfort if that makes sense?).
Obviously I can't speak for all private health companies but it was certainly the case with my own (Benenden) and it was actually my consultant gynaecologist who advised me not to mentioned ttc'ing when making my private referral for a laparoscopy.
Best of luck to you
I think progression varies a lot from person to person, but my consultant said you're definitely more fertile for the first three months after the lap.
I had another lap after 2.5 years and it had come back again - we were ttc again, but I've a history of early menopause in my family and it looks like I'm perimenopausal now, so doesn't look like #2 will be happening for us.
I just wished I'd known about my endo (and the early menopause) earlier, as we would have started ttc much earlier on.
Do you have any updates @sk1pper ? I also have endometriosis and beginning to work out what happens x