New to all this and wanted to share..

[Sarahlou38]

Hi, I've recently been diagnosed with Endomtriosis in January, I'm having an laparoscopy early April and just wanted to share and not feel so isolated with the situation I'm currently in.

I'm 23, and have had terrible periods since they started when I was 13. It was a year ago when I went to my GP with really bad pain symptoms, heavy bleeding and floods, pain during and after sex as well as bleeding. It took around 8 months for the GP to refer me to an gynaecologist and in my view that was because of my age. Just to note my body doesn't meet the doctors guidelines about what I should have at my age, as I had my gall bladder removed when I was 16 due to it failing and just not working. So its very frustrating when doctors say 'oh but your young' and dismiss symptoms which are apparent.

When I was sent to the gynaecologist I had a ultrasound which shown a chocolate cyst of 5cm, which has bleed out and re-grown over itself and from a scan last week is 8cm, I also have a fluid cyst on my left ovary of 4cm. An internal examination showed something on the lining of the neck of my womb but the gynae just mentioned it was 'something' and said it would be removed in my laparoscopy. The pain has been terrible, I'm taking paracetamol and Tramadol but this only takes the edge of the pain, water bottles help sometimes, is there anything else I could do at home for the pain?

Also, I'd been diagnosed with IBS since I was 19 and it appeared that these symptoms can now be related to the endo. I also recently have been getting such bloating and swelling, I've tried to stay away from bread and pasta etc but I'm still bloated, is there any dietary options anyone has used to help with this?

And lastly my main concern is over my fertility, I'm currently not looking to start my family and with all of these cysts and complications being at such a young age my worry is over my ability to get pregnant in later life. Would just love to hear some positive things concerning fertility and endo, no matter how small.

Thanks for reading, and I'm sorry its more like an essay than a post

[bomberkl]

Hi Sarah Lou, sorry you're having such a hard time. I was diagnosed with Endo 3 years ago after my first laparoscopy, they removed adhesions and did some lasering, my symptoms got better for a year or so then returned worse, I just had another ultrasound which has shown adenomyosis as we'll, so booked in for my second lap on 30th April. Have you got a lap booked yet? I know how you feel about fertility, I'm 29 in a couple of weeks and desperately want a baby in the next couple of years. After my last lap, my consultant said it may take a bit longer than normal (expect 2 years) but there's no reason it won't happen - they also suggested I start trying before I'm 32 (they normally say 35, so just giving you some more time) I'm scared about what they might find and say after my second lap, but the way I see it I'd rather know the facts and start preparing for trying earlier if I need to than leave it too late, I've also heard that the best time to conceive is a couple of months after a lap, not sure if this is true or not. Re the pain, I also use hot water bottles constantly and mefanemic acid, codryrdamol or tramadol depending on the severity of the pain, however I've found codeine and tramadol make me sick sometimes which is pretty horrendous. I've heard peppermint tea helps a bit so going to get some today. Sorry I can't give much more specific advice, but good luck and hope you get some treatment for your pain. Xx

[Sarahlou38 in reply to bomberkl]

thanks for your reply

Yeah I've got an laparoscopy booked for the 2nd of April which thankfully isn't to far away now. I'm relieved to here that the laparoscopy helped you for a while, at least there was some relief from the pain. Yeah I totally understand, you would rather know everything now so you can help yourself for the future and start to prepare for what's ahead. It's all going to be about timing, and just when fate lets it happen, which it will, its just so difficult ( and very frustrating) not knowing how long it may take. I'm sure that whatever they find they will be able to help with. I hadn't heard that before about conceiving after a lap, but that would make sense as if adhesions had been taken away there wouldn't be as much to battle with, certainly something to consider though, you never know what may help. I've had codeine before when I was younger and it never suited me either, I've had peppermint tea before and it does help with stress and anxiety I find, so could only help the positive thinking I suppose. Hope it helps with you.

Thanks though, its just nice to talk to someone who knows how you feel and share things. You don't get that experience when your sat talking to a doctor who hands you a leaflet about a condition which changes your life. xx

[becca88]

hi, im 25 my story is very similar to yours, periods always heavy and painful since 11, always had days off, put on the pill at 14, did nothing, all normal apparently, got pregnant at 18 and a year after i had my baby the pain got worse, cramps, spotting in between periods ect had 4 years of intense pain, passing out regularly (10-15 times a year) because my body couldn't cope, few hospital trips, kept in a few times and let home, always at the docs and fobbed off, ended up thinking it was all in my head and suffered in quiet, until i passed out again and the ambo was called, the on call doc wrote a letter to my gp asking to look into this matter, that was early last year,and since then it was all systems go, thank god!! although i was upset that it was suspected endo, then confirmed and treated through a lap, i was told to start trying for baby number 2 straight away!! been trying for 2 years prior op, its now a year since my lap and still no baby, pain gradually coming back, but when i see my consultant a few months back i asked for the dye test to see if my tube are ok, had that done last November, and there was my problem, my tubes had been so damaged my the endo that there is nearly no chance of falling pregnant at all then i had bloods done in january to see if my hormone level is normal and my egg count, they came back normal soooo that ment my only was of having a baby is ivf (mixed emotions) they said i was lucky to have got pregnant young before, and advised me to have the first lot of ivf in my 20's (ideally before 30) my advise is to try for a baby as soon as possible, spesh if you've got endo stage 4! ask for the dye test, and bloods, i could have been trying naturally for years not knowing, wish you all the best xx

[Sarahlou38 in reply to becca88]

Hi, thanks for replying, sorry to hear about everything you have been through, GP's really don't take women serious enough when it comes to our bodies. It shouldn't have taken that long for them to help diagnose you, I myself thought for a long while thought that it was all in my head after doctors just kept telling me to take paracetamol. So sorry to hear about your tubes, that must have been so frustrating that they didn't test you before so that you could have tried sooner. Thanks for mentioning it because that will definitely be something that I will ask to have and get done. You were blessed to have got pregnant, and I really hope if you decide to start your IVF that it works for you sooner Keep positive and trying, and thank you for your advice on those tests I will definitely be asking for them all. Hope everything goes well for you xx

[mad-arts]

Hi Sarahlou, I am sorry to ear you are all having similar experiences in the time delays and dismissive treatment from the GP's. I am 34 and was diagnosed when I was 21. It took nearly 3 years for my GP to diagnose my endo and the IBS connection was made by myself. I had little support from the doctors and hospitals, I had to investigate and note my own symptoms to help myself manage the pain and depression I experienced. I was hoping things had moved along in the medical profession, but I guess it is just a slow process. But the reason I wanted to reply to your message was that I do have a positive spin on the fertility query.

My partner & I had almost accepted that we may not actually manage to conceive, it was a very tough emotional realisation to make and with contraception methods being the only way to control my endo we had to make the most of the fact that I was not in pain and that after all those years we had it under control. 4 years ago I found out my cousin, also diagnosed with endo and ovarian cysts, was pregnant, very much a shock to her and her fiancé, as she had found coming off all contraceptives managed her pains better and had been that way for at least 3 years without getting pregnant so by that point had assumed it was not possible. So in 2012 my partner and I decided to give it a try and see what happened, fully understanding that if the pains started to get out of control we would end up back in hospital having another lap. The pains and emotions started to increase, but then we conceived Jan 2013, only to have a miscarriage at 6 weeks. Yes this was upsetting, and we discussed the next step as I was starting to get adhesions again and we were both nervous. But we figured trying for a few more months wouldn't make a massive difference to the pain and I had been through worse.

And now we are 8 months pregnant we have had some pain and bad days, but after being seen by the specialist at 3 months I was actually told they would treat this as a normal pregnancy, I was quite cross after all the years of being told it wouldn't happen, it nearly broke us apart, and I begged for a hysterectomy when I was 21, but even after all the negative support and pain we are expecting our baby boy in 4 weeks. I am still nervous and just want him here safe as it still feels we have that last hurdle to get past, but hopefully we have done it.

So you are still young and have time, I would recommend listening to your body on what works for the pain, having the implant was the only way I found I could manage it, tried the coil and pill and was not allowed the injection, so persevere and make your own notes. Don't feel silly keeping a diary, trial and error is much better on your own terms. I do wish you all the best for a happy pain free future x