Suspected Endometriosis, 3 months for an appointment, any advice on coping with it.

[SushiPaws]

While the pain is bad, I can take meds, use hot water bottles and a tens machine. It's the awkward feeling of being so uncomfortable and the spasms I get in my bum and down my legs, that's really getting to me. And the tiredness, I feel so weary.

Then there's the fact that people keep treating me like I'm being a big baby. "Your tired because you have two kids and it's hard work", of course having two kids is hard work and tiring, but I know my body and I know when I'm tired from running after kids and when I'm tired for no apparent reason.

"Everyone gets painful periods" yes but mine last 9 days and the pain means I have to crawl up and down the stairs, wear hot water bottles and breath through what feels like contractions. I've had 2 kids naturally, without pain relief, I know what pain is.

"You can't have endometriosis, your fertile" I've read that 40% of people with it are infertile, but people just ignore the facts and tell me it's just getting older.

"Your constipated" is how 2 friends have explained the spasms in my bottom. Even though yesterday every time I got a spasm in my bum, I lost control of my legs and vomited.

I've been to the doc on and off for 2 years and finally one has taken me seriously and referred me to Gynae. It's going to take 3 months for an appointment though and it makes me want to cry.

Anyone else out there with this? How do you cope?

I have endo (since 14, I realise that now) and recognise all those symptoms all too clearly (particularly the spasms in the legs and bottom. No you are not constipated). Bowel and bladder involvement with endo is certainly not uinknown, some women with endo are misdiagnosed as having IBS instead. I can also recognise the amount of time taken for anyone like a GP to take you seriously (I had one such person tell me that endo was not common; I replied that endo is the second most common gynae problem seen in women after fibroids. That shut him up).

I would try and see if you can get an earlier appt if you know which hospital you will be attending; you may get a cancellation appt.

www.endo.org.uk is a good website and has lots of information on it. What you need too is a gynae with an interest in endo along with thorough up to date knowledge. Endo often requires careful management; you need a skilled gynae.

Usually it is diagnosed through a keyhole surgery op called a laparoscopy.

THANK YOU Attila, nice to know I'm not alone and someone believes me (even if it's because they're going through the same horrible thing). I was dreading that this thread would have no replies and I'd feel like maybe I was being a big baby.

I called the hospital and the cancellation list is full at the moment, but I'm to call back next week.

Yes people have also mentioned Fiboids but the doctor didn't mention that so I've not looked it up.

I've just gone to Endo.org.uk and will join.

I'm really scared about laparoscopy, I've never had a general anesthetic. I'm guessing that if it's on my bowel then thats the only way they'll be able to see it.

Thank you so much for your reply, meant allot.

I have endometriosis and was diagnosed in 2007. I had a laparoscopy which was a ok, I was sore afterwards due to the gas they pump in you but it really wasn't too bad.

My symptoms are really like yours, with really heavy bleeds, feeling dizzy, sick and having the spasms. I take a combination of mefanemic acid from the second my period starts, and co-codamol or dyhyrocodiene (sp?) They help immensely. I use heat pads front and back and bath twice a day. If I'm really bad-usually alternate months-I take a few days off work. I had DC 6mths ago and am bf so thankfully have had no periods for ages.

Tmi-- I ususally can't manage to poo the whole time in on as is far too painful. I don't know if this is how you feel but I would push for a referral asap - I think I went at least a year back and forth to GP before I went to hospital, after first visit thought the laparoscopy was done within a month.

Forgot to mention, doing a lot of exercise really helped me with the tiredness, not when I was on, rest of mth!

I have it too and 5 Dcs, so completely sympathise! Have you tried an iron supplement to build you up! I found floradix helps but u have to take it religiously! I'm bf currently so it's not too bad, but ds5 Is 9 months now so my days are numbered! I too get no sympathy from anyone! Usual attitude Is you've got Dcs think yourself lucky!

Should have also mentioned I find tranexamic acid more helpful
Than mephanamic. It reduced the flow, brilliant for day 1-3 if u know half hourly toilet breaks r impossible! There is also nerathisalone which stops it altogether if u find yourself fainting from blood loss!!! Mostly though I manage with tranexamic acid. Swimming really helped me as it stretches out the muscles, but clearly not when bleeding!!!!

I've had endo probably since within a year or two of starting periods at 13, but I only had it diagnosed when I was 31, and that was after my sister was diagnosed with it and told me I probably had it too - thanks, medical establishment . The shooting pains up the jacksee and down your legs are hideous, along with the crucifyingly awful cramps - I used to spend every fourth Tuesday wrapped around the toilet on the floor in work a curious white/green colour, vomiting and unable to speak because of the pain. Labour was a breeze after that. It has improved for me after having two children, but prior to that I developed ovarian cysts which were so painful drugs like tramadol, co-codamol etc just did not touch it and I was up all day and night with the pain and off work for six months. I had to take a drug called Zolodex and go through a chemical menopause for three months to shrink the cysts before I could have surgery to remove them and the adhesions in my abdomen, which included one on my liver. I had stage four endo which is the worst category. I did have fertility problems, and only conceived after the surgery - took me three years first time including the surgery and 2.5 second time. I also think the endo or adhesions may have been a factor in why my first child was born at 31 weeks and has cerebral palsy. It was definitely a factor in my second pregnancy, as another endo related "chocolate" ovarian cyst which had been hanging around for a year or two grew and grew and eventually burst at 35 weeks - cue more hideous pain and an emcs and abdominal surgery 15 hours later, followed by a second stint in SCBU. But "everyone has painful periods" ......

What makes me really mad is that endo is hardly a new phenomenon, yet no doctor ever mentioned it as a possibility to me. I first went when I was 17 or 18 because of painful periods. If they had, and I'd been referred to a specialist, I might have been advised decades much earlier to take the mini-pill continuously or have progesterone injections (Depo-Provera if you're interested for yourself) and not have the effing periods, which just make the endo worse. Aarrggghhhh. Sorry, rant over now. Mine also last about 10 days to two weeks and I often get mid-cycle bleeding too now.

The initial laparoscopy by the way was the first time I'd ever had a GA, and both it and the post-surgery recovery were fine and quick, unlike the recovery after the operation to remove the cysts a few years later.... Sorry to scare you! It was why I was adamant I didn't ever want a CS.

Don't know where you are based but also try the she trust. They are in Wolverhampton but look at holistic solutions as well as traditional medicine.

I have has endo for 15 years and fully recognise all the symptoms u mentioned. I have had 3 laparoscopies and 2 laparotomies. All not great but my hire is that each time someone takes a direct look at my insides, I am more likely to get the treatment I need.

One thing I found really useful for the pain is a magnet you can wear on your underwear. Sounds a bit woo-hoo but it honestly really worked with me and I was VERY sceptical to start. Just don't lean over the dining table otherwise you end up with cutlery stuck to your nether regions!!!

Please feel free to pm me if you wish to chat some more.

The magnet has helped me, I had undiagnosed endo, had a womb eblation to stop my periods and now have adenomyosis. I'm waiting for a complete hysterectomy.

The magnet is available in Boots.

Good luck.