Endometriosis - any sufferers?(13 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
Hi. I have endometriosis, which was diagnosed by laparoscopy as part of fertility investigations. I'm sorry to hear your periods have been so awful, and from what you've said endometriosis could well be the cause. Tbh, though, there aren't any specific treatments for endo (apart from going on the pill, which is not what you want now!) So I think if you requested a laparoscopy specifically it would be a bit of a dead end (I mean they might confirm endometriosis but then you would have to be referred back to the fertility clinic to get any treatment). So, unless you are not eligible for fertility treatment on the NHS, I would just be honest with your GP - tell them you are having difficulty conceiving and you think it might be endometriosis. Yes, they will probably start with blood tests and semen test for your partner, but then will be able to refer to fertility clinic who can do a laparoscopy to confirm endo and discuss treatment options to help you conceive. Hope it goes well for you.
I only discovered I had a problem with endometriosis when I was pregnant with DC1 - as the consultant said my ovaries were 'riddled with disease'. It took us 12 months to conceive first time round and I had a nagging worry that we 'got lucky'. DC2 on the way was conceived month 1 of TTC!
If you've been TTC for over a year it is worth speaking to your GP regardless, but endo does not necessarily spell doom.
My endometriosis was only discovered after fertility tests. It may be that you also have endometrial cysts on your ovaries which can affect your ability to conceive. They can check for these fairly easily with internal ultrasound (doesn't hurt). They will definitely do a laparoscopy if they find the cysts and the surgeon can clean out the endo at the same time.
It took me 2 years to conceive DC1.
When we started trying for DC2, we had been trying for another 2 years when I had an ectopic pregnancy. During surgery for the ectopic, endometriosis was found.
A subsequent laparoscopy found that my one remaining tube was irreversibly blocked, but the removal of endometriosis greatly improved the pain I had been experiencing for decades (and that I'd assumed was normal).
I conceived DC2 by IVF 10 months after my ectopic pregnancy.
10 years after my laparoscopy, I have just started thinking that I may need to go back to my GP for a chat as all my menstrual symptoms are getting harder to deal with. I don't know if that is endo-related or maybe perimenopausal. Deep joy!
Good luck on your journey, OP .
Thanks everyone for your stories/comments.
I think I am ovulating from both ovaries, always get the LH surge and get distinct ovulation pain each month. The last two cycles I've had ovulation pain from both ovaries on two consequtive days, it's probably all in my head but it feels like my body is trying its hardest to get my eggs down my tubes. Not sure if I'd still get this with cysts?
I think I will ask my GP to be referred to a fertility specialist (they refused at my 12 month meeting) but I can't put up with the symptoms of menstruation anymore, I'm missing too much work. And I certainly can't go back on the pill if I want to conceive so they've got to help me this time.
Sounds like it could be endo. Only way to know for sure is laparoscopic surgery unfortunately 😕
Your GP will want to do some bloods and an ultrasound. Then you need to push for a referral to an endo specialist who can diagnose you (or not) and do proper excision of any endo that is found and also check your tubes. You don't want a referral to a fertility specialist for this. If you do have endo and you get it fully excised by an excision specialist and your tubes are patent then you'll have a reasonable window to then try to get pregnant.
I experienced horrendous periods from 14 which was managed by the pill, when I came off for ttc #1 the pain all returned, which I had assumed normal! It took fertility tests to diagnose endometriosis and following the laparoscopy I conceived within a couple of months
Good luck and go see your go asap
If you feel you're not getting referred/taken seriously within the NHS system and you can go private, I would. The NHS was useless for me - when I eventually saw a gynaecologist he told me that an enormous cyst on one of my ovaries would "go of its own accord in time" (and they took a year to diagnose that). When I decided to take matters into my own hands, nervous that going back in three months was daft because of the pain I was in, the specialist I saw was that anyone had said something that was just wrong, rushed me into surgery as cysts that big can twist, cut off the blood supply and you can lose the ovary. And diagnosed endometriosis. Not much later a friend's cousin had exactly that miserable problem.
From that point it's all been plain sailing though - I had stage 4 endometriosis when it was discovered (passing out from pain etc etc) and after several operations it's basically gone. I later fell pregnant when DP sneezed, basically!
Questions to ask your doctor
You may think that if you become ill you just go the doctor and they give you a drug to take away the illness
What if your Endometriosis is caused by things that you eat, or don't eat ?
Here are some questions to ask your doctors about Endometriosis
* What causes it ?
* How will looking at it and scraping it help me get better ?
* Could my illness be caused by things that I eat, or don't eat ?
* What can I change about my diet and lifestyle to help my body repair itself ?
These are easy questions to ask, but very difficult for doctors to answer as they know very little about Nutrition.
It may be worth asking them to refer you to a Dietitian or a Nutritional Therapist, as they specialise in Nutrition.
If your doctor won't do this, try a search for BANT and interview 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one to work with
Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis
*Increase your Vitamin D
*Increase your Omega-3
*Reduce your Omega-6
Here are some relevant references that may be useful to you:
Vitamin D Wiki
Optimise Omega-6/3 Ratio
How much Omega-3 ?
What to Do About Inflammation ?
Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up
Which foods make your Endometriosis worse and which help ?
Rufus I don't believe that endo is caused by what you do or do not eat! And if someone does have it, nothing really makes them fully better as such, there's no cure but symptoms can be improved and the growth of endo slowed down.
I just wanted to say that it's not true that there's no treatment for endometriosis, a number of experienced surgeons can remove patches through the laparoscope and really improve symptoms and fertility. Where in the country are you OP?
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