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Is this Endo?

(32 Posts)
TeaMuncher Mon 11-Jun-18 16:55:57

My periods have always been painful, and always affected my bowels more than anything (diarrhoea, cramps, etc). After DC1 I had a few really savage periods (which felt like contractions), but they gradually eased off and went back to 'normal' and just about manageable.

I am now 18 months PP with DC2 and my periods are getting progressively worse. The first day is excruciating, when I wake up I have to run to the loo and sit in agony, retching and cramping (shooting pains) until I have a BM. The rest of the time is spent with aches and cramps, until the next BM (or any wind) which again is complete agony. This month, I've had the same, but the worst pain yet, and even after the bleeding stopped 2 days ago, I've still been having terrible bowel pain and bouts of diarrhoea last night and this afternoon too.

If this is hormonal, why are things getting worse and not better?! It's so unpredictable (not to mention embarrassing) when it hits. I can't look after my kids, I just have to lock myself in the loo. It's AWFUL!

Any help appreciated! I don't know much about endo, but a doc mentioned it when I had an US scan recently. He couldn't see anything, but said it was possible (would need further investigation). The GP just brushed it off saying "there's no cure anyway" so basically just 'get on with it'. But I'm struggling to cope every month sad

ScreamingValenta Mon 11-Jun-18 20:24:48

Sorry to hear about your horrendous symptoms, @TeaMuncher.

It certainly sounds as though you should be investigated for endo. Bowel issues are common if you have bowel adhesions - this happened to me. Your GP's attitude is appalling - there might not be a cure, but there are several treatment options.

This website is a very useful resource and explains more about diagnosis and treatment pathways:

TeaMuncher Mon 11-Jun-18 20:39:46

Thank you @ScreamingValenta it's reassuring to know I'm not exaggerating (which I know other people think). What were your symptoms? How do you manage the pain?

ScreamingValenta Mon 11-Jun-18 20:53:51

The symptoms were intense pelvic and lower abdominal pain, radiating down my legs - this could happen at any time, but was worst during my period. My period were heavy and painful. I also suffered indigestion, bloating and alternate diarrhoea and constipation. This started in my late 20s, and got worse and worse over a period of 10 years.

I found Naproxen the most effective painkiller, but it exacerbated by digestive issues - there would come points where the pain was so bad it was 'worth' the upset stomach afterwards, though.

When I was (eventually) diagnosed, this was only after I ended up in A&E with suspected appendicitis - the surgeon went in by laparotomy to remove my appendix, found my appendix was absolutely fine but I had endometriosis everywhere. My womb, bowl and one of my ovaries were fused together.

I was put on a long waiting list for treatment, by which time the pain was constant and was starting to affect my ability to work. I fortunately have private medical insurance through work, so I saw a consultant privately and after looking at my records, agreed with my request to have a hysterectomy, which went ahead and was the best thing I ever did.

I'm now pain free, but endometriosis blighted my life for over ten years. If it had been diagnosed earlier it could probably have been ablated without the need for such major surgery.

Endo is a condition where women need to be persistent and not be fobbed off or told it's 'one of those things' - please go back to your GP and be assertive about a diagnosis and treatment. flowers

ScreamingValenta Mon 11-Jun-18 21:01:49

^that should say 'bowel' not bowl above, obviously ( sad autocorrect!)

Graphista Mon 11-Jun-18 22:30:24

Sorry you're going through this.

Sounds like it could well be endo.

Your GP's attitude is dreadful (but sadly not uncommon).

As pp said there may not be a cure but there ARE treatments. Medical and surgical.

You need referral to a gynae preferably one that specialises in endo as its a complex condition.

I have endo on my bowel too. Used to mean lots of diarrhoea etc but I'm now on meds for something else that are known for having the opposite effect and my bm are kinda normal now if that makes sense?

Definitely be assertive with GP.

honeysucklejasmine Mon 11-Jun-18 23:00:36

Wow, your GP is awful. Definitely seek a referral. What you describe is not normal and should not be something you just put up with. Emphasise to your GP the impact it has on your ability to go about daily life. This is not ok.

Lostinedinburgh Tue 12-Jun-18 13:15:12

Agree about GP. If it is endo (and it does sound like) the sooner it's diagnosed and treated the better. Where are you? We're lucky in Edinburgh as we have a leading endo expert at the Royal Infirmary.

TeaMuncher Tue 12-Jun-18 21:36:46

@Lostinedinburgh sadly I'm in Cornwall where it feels like there aren't any good docs sad

TeaMuncher Tue 12-Jun-18 21:40:09

Thanks for the comments/ support everyone. Much appreciated.

Chances of a hysterectomy being offered to a 33yo? hmm

barnacharmer Tue 12-Jun-18 21:47:58

Chances of a hysterectomy at 33 on the NHS are low but a skilled surgeon can excise and give you years pain free. Hysterectomies don't always work to permanently stop endo.

I was in constant pain and had to use a tens machine all the time then take tramadol. I had a laparoscopy where they excised the endo and had about 3 years pain free, I controlled it with diet for a few years then I had a child. She's 3 now and the pain has increased gradually over the last year. 8 years isn't too bad between surgeries.
Your GP is an arse and endo is diagnosed by laparoscopy not ultrasound so insist on seeing a gynae. Be aware they will try to put you on various hormones as a first treatment. Make sure you do your research

chickenpox100 Tue 12-Jun-18 21:53:19

There most certainly is treatment for endometriosis and you should make an official complaint against your GP because his advice is dangerous and utterly wrong.

You need a laparoscopy. It's the only way to diagnose endometriosis (and treat it if it's there). You need it quickly. In your position, if it were financially possible, I'd research the best consultant local to you who also does private work and has a very short waiting list, get a referral via an online GP and make that appointment ASAP.

chickenpox100 Tue 12-Jun-18 21:56:50

More evidence that too many GPs are paid ridiculous amounts to be appallingly incompetent...why is there not some line manager who can haul his ass up?

Graphista Wed 13-Jun-18 03:02:32

It's also stupidly hard to complain about gp's unfortunately.

ScreamingValenta Wed 13-Jun-18 07:14:58

I would look at ablation rather than a hysterectomy as a first line treatment, @TeaMuncher. In my case, the hysterectomy was the only option because my endo had progressed to a stage where everything was fused together; and I was in my early 40s and already peri-menopausal. If I had been diagnosed ten years earlier, when my symptoms first started, there would have been more options available to me. It can also be managed hormonally - some women have success with the Mirena coil.

Your GP should be referring you to a specialist. There are BSGE specialist endometriosis centres around the country and these are generally regarded as the gold standard of treatment.

As a pp said, you need a diagnostic laparoscopy in the first instance and sadly, it sounds as though you will need to be assertive to request this.

Mabelface Wed 13-Jun-18 07:37:12

I was diagnosed by laparoscopy 15 years ago. Whilst I was under, they did a d and c, hysteroscopy, lasered off the endo and fitted a mirena coil. I've not had a period or pain since, and I'm on my 3rd coil. My periods used to be similar to yours. I paid privately for my initial consultation with a gynae then transferred to the nhs for my treatment, bypassing my then useless gp.

TeaMuncher Thu 14-Jun-18 07:50:58

@Madlizzy that sounds like the dream solution!

Sadly, I tried the mirena coil but I kept having shooting pains down my leg and really bad mood swings, so I had it removed. I think I'm just so sensitive to any hormones.

When I was younger I was on the combined pill which suited me really well. But I get migraine with aura, so I can't take it any more. The mini pill affects my mood, but to be honest I'm tempted to go back on just to avoid having another period!

Also, I currently still have diarrhoea and cramping, 3 days after the bleeding has stopped. Haven't eaten properly in days and am totally miserable sad

stvincent1987 Thu 14-Jun-18 23:07:23

Have you talked to your doctor? The BBC put this video out about a young woman who had severely painful sex and bad periods. It might be worth asking for a laparoscopy.

TeaMuncher Sat 16-Jun-18 22:11:33

Saw GP yesterday. She said to try the mini pill again (Desogestrel) and then if it doesn't improve things, to come back for a Gynae referral and a Lapro-thingy (??!).

I'm so nervous about going on this pill. Last time (which was a long time ago) my DH said I was very low and snappy all the time. It really affected my mood, etc.

I suppose it is likely that it will affect me in the same way again...? But perhaps not.

littlerocketman Sat 16-Jun-18 23:13:12

But by the time you have got up the waiting list you could be exponentially worse.

You need to see a consultant who will do an internal exam and make a proper decision about whether or not it's worth investigating...

Don't let the 'let's see how long we can procrastinate...oooh nothing we can do about the waiting lists' NHS referral system mess with your health. The NHS acknowledges that the wait time between presenting with possible endo (to a GP) and receiving treatment is scandalously long.

TeaMuncher Sun 17-Jun-18 07:45:18

@littlerocketman I know, and in the meantime I can bank on another excruciating period. The line was that the Gynae would start with 'hormone treatment' first anyway, even if it was Endo.

littlerocketman Sun 17-Jun-18 11:57:07

I wouldn't believe that teamuncher, especially if you see a consultant privately (when they can follow their instincts more).

I didn't have hormone treatment first. The way to treat endometriosis is with a laparoscopy. The only thing I can think of that a consultant might do before a lap is an internal exam to see if your pain responses point towards endometriosis - and that's diagnostic, not a treatment. GPs are getting far too good at thinking of reasons why there's no point having a referral. Get on with it. The NHS isn't fit for purpose.

honeysucklejasmine Sun 17-Jun-18 12:21:29

I didn't have hormonal treatment from my gynae either. Internal exam followed by diagnostic surgery. I had partial treatment there and then (it was so extensive the consultant wasn't happy to do it himself), followed by hormonally induced temporary menopause whilst he referred me on to a more skilled surgeon.

Laparoscopy is the only way to diagnose endometriosis definitively.

littlerocketman Sun 17-Jun-18 13:19:30

My experience was not unlike yours honeysuckle. I just wonder if women in the OPs position realise how quickly endo can spread once a flare-up has begun.

squirrelnutkins1 Mon 18-Jun-18 18:56:25

Glad I've found this post as it feels like I'm alone at times.

I've never read a description so like myself over a few of you guys posts!!!

I was diagnosed with endo and for years I would get random attacks of pain any time in the month, one poster mentions this and it's honestly the first time I've read that. It'd start on one side, usually the left then radiate down into my 'bits'. I HONESTLY a couple of times felt like I wouldn't be surprised if a baby popped out as I was in so much pain. NO exaggeration.

I've recently found I've got a 23mm endometriod cyst so that's why my pain is often on the left. I have to pop a load of pills, hot water bottle and just go to bed. I had to leave work a couple of months ago with the pain. I honestly don't know how I made it home.

Will be keeping an eye on this post.

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