Just diagnosed...

[Buttoon]

Hi,

I've been suffering with horrendous period pains since I started them, when I was 12. And I have just been diagnosed as had a laparoscopy on Friday - I'm very ouchie right now! I have suffered with severe pain when going for a poop, but this symptom I didn't tell anyone about until recently as I was embarrassed

My period pains, were AWFUL - to the point where I could stand up straight or I would be screaming etc But I thought for years that this was normal as if I ever spoke to sisters or friends they'd say they had really bad period pains too.

Anyways - I am 37 tomorrow, so that's 25 years I've been suffering in silence. Turns out I am riddled with endo and scarring. My womb was really tilted as being pulled by endo (explaining the pain during sex), both my ovaries and fallopian tubes were stuck to my walls too  The surgeon has freed them all now but he couldn't remove all the endo this time. He has said to see my gynaey in 3mths to see if it has helped at all but has recommended that I have a laparospic hysterectomy (sorry about spelling mistakes), if I do not want more children. Thing is, my situation is - I am a single Mum to my lovely 3 year old and I have a boyfriend who I don't live with yet. He's only 30 and he really wants a baby one day. I'm not sure if I do yet. I realise I'm getting old. I'm in two minds about it all and don't know what to do. Is it true that as I have endo, I will potentially need to have this surgery done again? And possibly again some more? As it's been SO painful. By belly swelled right up, look about 8mths pregnant! Also have a huge hard lump under an incision and awful trapped wind pain. Not sure I want to keep doing through this....?

I think I would just like to chat to some people who are going through the same as me. I am ALWAYS tired, have been like this for years. Is it true that endo can cause fatigue? And if so, how come?

Anyways, I'm waffling on - but if someone could chat to me about it all, I'd be really thankful thanks x

[JeanOsborne]

Hi, having just read your post I'm tearful as your story is so so similar to mine. I started my periods at 8 1/2 by 15 I would be rolled up in a ball screaming in agony. Doctors didn't want to know so put myself on the pill which helped slightly. Skip to now . I'm 42  and last year was diagnosed in July with severe endo and possible adenomyosis. This only came about because my husband and I had been ttc for four years with no success. Was sent for scan in October 2014 which showed a 6 cm endometrioma on left ovary. Saw endo specialist January 2015 who said it was endo and would like to do a exploratory lap to find out exactly what was going on. That happened in July. By then endometrioma had grown to 11cm , everything was so badly stuck together with adhesions he couldn't see my uterus. Because of the amount of damage to both tubes and ovaries he said the chances of falling pregnant even with ivf were minimal. So we decided on hysterectomy. On 3rd March this year I had a total abdominal hysterectomy with removal of both tubes and ovaries along with excision. Although not being able to have children was devastating I feel so much better now and know that I can have a better quality of life. 

As long as the endo is fully removed via excision with a specialist from the BSGE list you shouldn't need to keep having surgery. If you want to try for another baby  having the endo excised first should increase your chances . But it would be best to discuss this with consultant at your follow up. 

Only you can decide on whether you go for a hysterectomy. If you want to talk anytime I'm here you can pm me if you prefer, just click on my name then click message. You're not alone Hun. Get plenty of rest and do rush to making any decisions . You will be very emotional for a while so just let it out but remember I'm here if you need me.

Ps the trapped wind try peppermint tea as it helps disperse it and try to move around .

[Buttoon in reply to JeanOsborne]

Hi Jean,

I'm so sorry to read your story, that's so sad GP back when I was a teen did the same for me - stuck me on the pill at aged 16 to help with the pain. Really, I think my daughter is a little miracle and I know how lucky I am.

It's all just very overwhelming if I'm honest as the whole baby thing has been a bit of an issue anyway as my boyfriend definitely wants a baby, but I've always been unsure about it. I worry that my daughter might not feel as loved if we had one, also - I don't even live with my boyfriend yet so there's lots to sort out first before even considering it. And with being 37 tomorrow, I don't want to leave it too long.

But now being told that I should have a hysterectomy, this has made me feel all over the place. My lovely boyfriend has said not to think about it just yet as still recovering and only just found out. He did say though, that I need to do what's best for me and my health. Him saying nice things like that, make me want to have his baby! Thing is, if surgeon has recommended I have one and I don't, what does this mean? I'm assuming the endo is really bad right now, so I might not conceive anyway?

Another question - I get abdominal migraines, been getting them since I was a child, they're awful. I've had probably only 3 head ones in my life (whilst an adult), I have had a C shaped aura all morning which means I will probably get a head one today - do you know if migraines and endo are linked at all?

Really appreciate your reply. Glad you are feeling better about it all now x

[JeanOsborne in reply to Buttoon]

Hi if it were me I think I would have excision surgery to remove as much endo as possible with the hope of ttc.but that's just me. Only you can decide. But your boyfriend is right you need to recover from this op and give yourself time to come to terms with it all. I didn't know you could get abdominal migraines! The surgeon can only advise. Don't let them pressure you into anything. I don't know whether there is a link between endo and migraine, but endo causes inflammation so it's very possible. Is it a general gynaecologist and where are you in the uk?

[Buttoon in reply to JeanOsborne]

Thanks. Yeah, guess I shouldn't rush such a decision but it's all I can think about at the moment. Not many people know about abdo migraines, so much so that I was in and out of hospitals and Dr's from the age of about 10 as the pain is horrific....and I was only diagnosed with them two years ago, and that was only because my new GP suffered with them when he was younger! I might make an appointment to speak to him this week about stuff.

I'm in Devon. What do you mean about general gynaecologist? I saw one at beginning of the year, then someone who shares a secretary with him did my op rather than him, but my follow up appointment in 3mths will be with same guy I originally saw.

[Tboag]

Hi, so sorry your suffering with this awful condition, due to the severity of your endo, you need to be seen by a specialist endo surgeon, you need to look up a bsge centre, and be reffered via your gp, hopefully a thorough excision job will give you more time to think things over, a specialist endo doc has had more training and experience in excision work, and under the nhs contract it is vital you see one. Not a general gyne, xxx rest well and take care of yourself, xx

[Buttoon]

Out of interest, the surgeon didn't tell me what stage it was? But the nurse said there was a lot and he implied there was - with lots of scarring. Is there a way of finding out what stage or does it really not matter?

[JeanOsborne]

By the way Hun happy birthday for tomorrow. Staging isn't that important it's more of a guide for the surgeon. It relates to where the endo is. 

[Buttoon]

Thanks Not sure it's going to be the best birthday ever as in pain, plus got to take my daughter to hospital for an ear appointment :/ 

Ah right, wasn't sure re. stages you see. But by the sounds of what they said (nurse and surgeon), there was a lot 

Many thanks

[Buttoon]

Wow, how do you know all this? Thanks! I've read the notes that the surgeon wrote and it's all quite hard to understand but I think there was a mention of having tethered fallopian tube? But he did say they looked healthy?

[Buttoon]

Hi,

So it was a week ago that I had it done. I changed my plasters on Wed as they were starting to come off a bit (nurse said to keep them on for a week).

I'm planning on having a bath tonight (yaay, missed them!!) - should I just remove the plasters then get it? Should I try cleaning the incisions with anything? The one in my belly button looked worse as loads of dried blood - couldn't even work out where the cut and stitches were! I'm a bit squeamish and hoping the bath'll clean it for me...? Any advice please?

[Buttoon]

Sorry typo - I meant should I just remove the plasters, then get straight in the bath?