Bad time

[Kwala12]

Hi all,

Not sure if I just need a rant or what going on with me. Took me nearly three years to get a diagnosis after being told frequently its all in my head, I am being anxious etc i am sure you have all heard it. Then I got my diagnosis for laparaoscopy in September 2015. Confirming endometriosis, they found adhesions and a chocolate cyst. I am only 19 nearly 20 and I have one child who started school this year. Some may say it would be silly of me to have another child so young but I am in a stable relationship and I dont want to take any chances, me and my partner have been trying for 8 months but had no luck so far. I know if all fails I should be grateful I have my son but I had a very hard pregnancy I had a lot going on as a young person living with a alcoholic mother who had domestic problems we had the social involved and i literally had to fight to prove I wasnt going to be like her. I would like the chance to experience pregnancy with my new family. I know it may sound silly to some people. Anyway, I am 2 months post op and I am on my 2nd period which was been horrible I havent been able to do anything. Even during the month it is all so bad. I suffer with bad bladder pain, after getting constant tests they shove me on antibiotics which do nothing. I am waiting for a camera test to look into my bladder though. I literally couldnt move and would scould myself with the hotwater bottle just to ease my pain. Paracetomel does nothing, I just wanted something to stop the pain. Then day 2 even though my period was late (Always get my hopes up its going to be a positive test) I now have the period pain and the bladder pain which is not a good combination. I also have had odd bowels for a while now, no one listens to me but I sometimes get blood and always get mucus. Drs say IBS as usual. Gyno wanted me going for more tests but gp didnt follow up referrral...I also have very sore lump in my breast which I got before when I was on the pill but havent had since that which is odd as Im not even on the pill anymore. Everything just gets me so down, I dont even think I have accepted that I have this condition at such a young age, I come from a big family and none of the women have any problems. Then I start thinking if I did something wrong to deserve this. I have had to stop working because I am not myself anymore, I have no motivation or energy to do anything. Yet I am trying to control this condition, possbily concieve, work, look after my child and house, think about University and it is all too much! Am I even within my rights to ask for a fertility test? Even if it would ease my mind. I just dont think i was given enough information at my consultation. Sorry for such a long rant. I just feel hopeless and if there is actually someone out there who can actually say to me 'I know' and really mean it it may just make me feel a little less alone.

[Bettyheslop]

Hello, I am sorry you are having such a hard time. Of course you didn't do anything to deserve endometriosis unfortunately you just happen to be one of the one in ten women that have it.

It really doesn't matter if other people think you are 'silly' for wanting another child so young. I doubt anyone does anyway but you are an adult, it's your life, your choice. Never worry about what other people think, live your life how you want to and be confident in your choices. I can't pretend to know exactly how you are feeling as my situation is a bit different. I was diagnosed with endo 3 weeks ago, I suspect I have had it for over 20 years. I sympathise with your pain, I have burnt my tummy many times over the years with a hot water bottle trying to ease the pain. Now I use hot water bottle, tens machine and co codamol all at the same time, doesn't always work but sometimes it does. I have had breast lumps and also lumps in my armpit but they come and go with my cycle over the month usually.

I am not sure how the fertility issue works, I had 2 children in my early 20s and now I am in my 30s and have been trying for a baby for 3 years with no luck. According to my GP I wouldn't be entitled to any help as I already have 2 children but when I went for laparoscopy the specialist said he would happily give me fertility drugs just not IVF. I am not thinking about that too much at the moment though as found out I have wide spread endometriosis and my tubes are blocked, I am waiting to see a different specialist now.

You sound like you have a lot on your plate, try and deal with one thing at a time, life can be overwhelming sometimes but it won't feel that way forever. Can you go back to GP and tell them everything you have written on here? Is there another GP in your surgery you could speak to if not? Did they treat your endometriosis or just diagnose it? Have you had follow up appointment with endometriosis specialist to discuss what's next?

You are certainly not alone, please don't feel hopeless,

Xxxxxx

[Kwala12 in reply to Bettyheslop]

It just seems like I am selfish for moaning about being in pain because its only 'period pains'. There are worse things to worry about etc... People expect you to just get on with it but for myself it just isnt that straight forward, I have been down mentally as well as this. It has completely taken away the person I was, someone said to me the other day where was that bubbly smart girl I met two years a go and it just made me cry. If I go to the GP do you think they will give me some stronger pain killers because Paracetomel do nothing for me. Does the tens machine help? I havent had lumps this bad in my breast since I was on the pill, I was wondering if I should get my hormones checked out because that was what was causing it last time. ? yes I think that would be the case with me, I wouldnt be entitled to IVF which I believe is just ridiculous. That there is actually certain regulations you have to meet before someone decides if you can have another baby or not because ultimately its in their hands. Sorry to hear that. I have just registered at my 4th GP surgery because no one seems to listen or want to help. I have an appointment on Thursday, but I know you only get 10 minutes and its so hard to say everything. They treated my endometriosis as well as they could, but I dont feel like it has even helped, at all. I saw my gyno 6 weeks after surgery but because I said we wanted to have a baby, that was it good luck with trying to concieve and that was it..Thank you. It does certainly feel like it at the moment but it is nice to talk to someone who knows what I am going through. xxxx

[Bettyheslop in reply to Kwala12]

You are not at all selfish, it is hard to describe the kind of pain you are in to people who have never experienced it. Personally when I am on my period it hurts more than when I was in labour and I get other pains over the month. Maybe there are worse things to worry about but it doesn't stop your periods causing you pain.

I think the GP would be able to offer you stronger painkillers or maybe refer you to a pain clinic. You may be limited to what you can take as you are trying to conceive. I have heard it can take up to 6 months to feel the benefit after a laparoscopy so it may improve.

If you are seeing a new GP tell them everything including that you feel down mentally, it is their job to help you. There are 4 GP's in my surgery and I see different ones for different issues, they don't all have the same perspective.

Make sure you go about breast lump too, you could do that at a different appointment, it definitely needs investigating.

Also I often book a double appointment and tell the receptionist I have 2 issues to discuss, you are right 10 mins isn't enough.

I do find a tens machine helps, it doesn't seem to be a big pain relief but it definitely distracts from the main pain as the sensation is so different. I alternate between co-codamol and ibuprofen, use my tens and hot water bottle. I don't bother with paracetamol it would never be enough.

People always know when I am in pain though as I often rock back and forth without even realising.

I do understand that there is only a limited amount of help with fertility which is why I let it go 3 years. I only really had a laparoscopy as I had started to bleed every day and that was the bit really bothering me, I have almost got used to the pain, crazy as it sounds but I have had it for over 20 years. It turned out to be the fertility expert that did my laparoscopy and I was very surprised when he said he would happily give me fertility drugs. At the moment I just want to stop bleeding. I have still hope for another eventually, it's strange as even though I have 2 children, I want another as desperately as I wanted the first.

You will go back to the bubbly person you were. I know it's not easy for everyone to be open about personal things but I really do find telling people exactly what I am going through really helps them to understand. Everyone I know knows I have horrid pain, I flood terribly when on period and have massive clots. They might not want that much information but I find trying to hide pain impossible and people might think I am just really grumpy

Xxxxxx