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Thinking I might have something wrong

(17 Posts)
user1840873076 Thu 06-Apr-17 21:00:32

I don't know if this is in the right place but I'm a bit worried and unsure so please be kind. I've been looking into endometriosis and it seems I have some symptoms. I've not known what's been wrong with me for a while and maybe this could be an explanation. Does anyone have endometriosis that can talk to me about symptoms? Thanks x

user1840873076 Fri 07-Apr-17 10:49:20

Can anyone help?sad

Carley27 Fri 07-Apr-17 11:27:51

Hi, I was diagnosed with endometriosis in September. Main symptoms I had were bleeding between periods and sore bowel movements (during period only).

What's making you think you might have it?

Carley27 Fri 07-Apr-17 11:29:14

Sorry, should have included that I also started finding sex painful (previously no problems), and that my periods began to get more painful.

user1840873076 Fri 07-Apr-17 14:59:15

Thanks for replyingsmile sex has been painful during and after for over 6 months now. I'm on the pill so don't have periods but I've been having more random bleeds when before there was no problem with that at all. My bowel movements are sore and I get some bleeding too

Carley27 Fri 07-Apr-17 16:22:26

Your symptoms sound very similar to mine. I also had some bleeding after bowel movements, and it's a symptom that definitely needs to be checked out.

Endometriosis is definitely a possibility - have you been to your GP yet? I would ask to be referred to a specialist as a lot of doctors don't know much about endometriosis unfortunately. Also make a list of your symptoms and any questions before you go as it's easy to forget when you're on the spot.

Sorry you're experiencing this, the symptoms can be worrying and it can take a while to be diagnosed flowers

The endometriosis UK website has a lot of information you may find useful. And I'm here to chat if it helps smile

user1840873076 Fri 07-Apr-17 16:43:52

Thank you so much, I'm worried that the doctor will just send me away and tell me it's all fine, I've not had much luck with doctors recently. I went to one of my doctors about painful sex and she just had a quick look and said nothing was wrongconfused

Carley27 Sun 09-Apr-17 12:12:26

I would list all your symptoms (however small they seem) and see what your GP thinks. Definitely research endometriosis and explain why you think it's possible you have it. And I would ask to be referred to a gynaecologist.

Your GP may well want to rule out other things first and/or have other ideas about what may be causing your symptoms. Unfortunately endometriosis often takes a while to get diagnosed so I do think it's worth seeing a specialist if you can (a gynaecologist will know far more about endo and other conditions in that area).

The first GP I went to wasn't worried about my symptoms at all (mainly just abnormal bleeding at this point) and tested for STI's (negative) and noted I had a cervical erosion so referred me for treatment. This did not stop the bleeding.

I went back to the same GP who tested for STIs again (still negative) and referred me for a biopsy (clear).

I decided to try another GP as I started to have painful sex (I also started having pain/bleeding with bowel movements but I was too embarrassed to say anything, which is silly). She changed my pill which improved the pain (although sex was still painful) but not the bleeding.

I moved to another area and decided to see another GP. This time I also mentioned the pain/bleeding with bowel movements and he suggested endo could be the cause. He referred me for an ultrasound (clear) and to a gynaecologist. The gynaecologist talked in depth about my symptoms and also suspected endo. I then had s diagnostic laparoscopy (keyhole surgery) and was diagnosed.

I've since had some treatment and am doing much better, but I wonder if I'd been open about ALL my symptoms and had been aware of endometriosis earlier if I could have been diagnosed earlier.

Really hope you get some answers soon, I know it can be worrying having these symptoms and not knowing why.

user1840873076 Sun 09-Apr-17 23:10:50

Thanks for the advice, my doctors seem to just patronise me and laugh at me, probably because I'm young. I am a bit nervous about going, really nervous if I have to end up getting a laparoscopy sadconfused

Carley27 Mon 10-Apr-17 13:32:32

How old are you, if you don't mind me asking? I was 24 when I got diagnosed but 21 when I first went to a doctor about it. It was daunting and I do think some doctors took it more seriously than others.

Can you see a different GP?

I was worried about the laparoscopy too but it honestly wasn't that bad. It may not even come to that for you though, one step at a time flowers

user1840873076 Mon 10-Apr-17 19:05:32

I'm 19, just hoping everything is okay. If you don't mind me asking, did the doctors say anything about it affecting fertility or having kids now rather than later? Worried about that part

Carley27 Mon 10-Apr-17 20:09:20

It can affect fertility but it really depends on what stage of endo you have. The severity of symptoms don't relate to how advanced the endo is which complicates things (i.e. you could have no symptoms but advanced endo, or have a lot of endo pain but only mild endo).

In my case it's pretty mild, and after having two rounds of medication my gynaecologist said if he did another laparoscopy he wouldn't expect to see anything. However, endo is incurable and he has warned me it's likely to get worse again in the future.

He knows we wanted to TTC soon and doesn't think I will have any problems, but he said not to leave it for too long.

I know it can be worrying, but please remember that you don't necessarily have it, and even if you do there are treatments and options available. You definitely have time on your side with regards to TTC. Are you TTC at the moment or considering it anytime soon?

Also you may want to have a look at this website:
www.endometriosis-uk.org
There is a lot of information on endo and also a support forum.

user1840873076 Tue 11-Apr-17 01:33:47

Thanks for all the advice smile I don't expect them to say I have it but I have the worst luck haha. I would like to ttc within a few years with my fiancé so I was a bit curious as to whether it could affect it

user1840873076 Sat 15-Apr-17 00:25:34

I'm really starting to worry that I have endo now as the symptoms are getting worse. The one thing that scares me is the laparoscopy to diagnose because it scares me so much knowing I may have to have surgery, I've never had surgery before

Carley27 Sat 15-Apr-17 08:15:54

I would try not to worry about the laparoscopy at the moment, it might not come to that. Are you going to see a GP again regarding your symptoms?

FWIW I was also terrified of the laparoscopy (first surgery for me). I was scared to be put to sleep but in hindsight it wasn't bad. I got my cannula put in and they were fiddling about with things, I suddenly felt quite relaxed and was about to ask if they were giving me the anaesthetic and then I woke up! It was just like I'd been asleep.
The recovery seems to vary from person to person, but I personally found it fine and was back to work after a week.

The surgery is worth it to get diagnosed, but fingers crossed you won't even need it! Just get yourself to the doctor and they can try and get to the bottom of your symptoms smile

user1840873076 Sat 15-Apr-17 21:57:46

Thank you, I'm going to book a doctors appointment for next week

Carley27 Sun 16-Apr-17 09:52:58

Hope it goes well flowers

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