Newbie & scared (sorry if tmi)

[Twinklybelle]

Hi everyone,

This is my first post on here. I am 34 years old and my symptoms started 5 years ago.

I've always had painful periods but compared to the left 5 years they were a walk in the park!

I had IVF with my late husband back in January 2012 which was unsuccessful. In the October is when I had my first experience of the truly intense pain. I had started my period and needed to go to the loo, I tried to open my bowels and omg I have never experienced pain like it, it came out of nowhere and was that bad that my sister called an ambulance and they took me in to check me over. The hospital did nothing but give me morphine and send me home telling me to see my doctor!

When I went to the doctors was told it was dysmenorrhoea and given menafenamic acid to help ease the pain.

I lost my husband in the November 2012 and I put my health on the back burner a bit and didn't go back to the docs for a while as figured maybe the stress was playing a part in the pain. Eventually I went back just to be topped up with more acid tablets. Just makes you feel like it's all in your head!

Roll forward 5 years, I'm now with a wonderful man Dave who is so supportive and looks after me so well even when I'm rolled up in a ball in the floor!

I went back to the doctors again last month as I've had enough and he finally referred me for a US scan. I decided to go through bupa as I have it at work. My scan showed both my tubes are blocked and have fluid in them (one was noticed to have sight fluid after id had my injections for ivf but the doctor made the decision to carry on), he also said I have a very thick endometrium wall and my symptoms are all in keeping with endo so he referred me to an endo/fertility specialist (who ended up being the Dr we saw for ivf!) I now have my 1st Laparoscopy on weds.

My symptoms are really painful and heavy periods for the first 3 or so days, shooting pains that make me jump out of my seat, I get clots which can be the size of a 50p coin, the pain radiates into my legs and back. I have spotting in the days leading up to my period, this involves cramping too.

Opening my bowels is so painful and the pain comes on so quickly, I don't pass any blood from my bottom but I do have quite a bit of mucus. Once the stool has passed the pain eases but it leaves me feeling sick, dizzy and lightheaded. I have occasionally had pain during sex but not to much. I bloat quite a lot during my period too.

Has anyone else experienced it like this? I'm getting quite nervous about my lap on Wednesday now 😣

Thanks in advance

Donna xx

[Twinklybelle]

Bump ☺️

[missm87]

Your symptoms sound exactly like mine. I hope your lapscoprosy goes well. Xxx

[Twinklybelle in reply to missm87]

Thanks missm87! Have you had a diagnositoc laparoscopy? Did yours turn out to be endo? Xxx

[missm87 in reply to Twinklybelle]

No I am waiting for my appointment for it, finally got put forward for it after years of suffering and trying every contraception possible. I have my pre-assessment for it on 23rd November, I'm just hoping I don't have to wait too long. I just dont know what the usual wait is from your pre-assessment to the actual operation.

[Twinklybelle in reply to missm87]

Is ridiculous how many times you have to go back to the doctors before that actually so something about it isn't it. They really should change the guidelines!

I hope your pre-assessment goes well hun, I'm afraid I don't know the wait times as I have been fortunate enough to go private through work cover xx

[lisalovescake]

Sorry to hear about your story. I've just found this site and am so grateful. Waiting for 1st lap too. Same age as you no children. What have they told you about your fertility? I am so down about it. They said may have to remove my ovary as I have a cyst on it from the Endo. I've tried for two years no luck xx

[Twinklybelle]

Hi lisalovescake

[Twinklybelle]

Hi lisalovescake When did you get diagnosed with the endo? Sorry to hear about that bless you. How long have you had symptoms for? Having things wrong is hard enough but when it's messing with your fertility it's so much harder. Our fertility problem originally was due to my husbands sperm, it was 99% abnormal. I also had a low egg yield and poor embryo development 😔 when me and my new partner want to have children is more than likely going to be if again but we will have to post as I've had my free one on the NHS even though he hasn't, it's really not fair. Both my tubes are blocked and have fluid in so I'm guessing I will have to have them removed therefore not being able to ever concieve naturally.

When is your lap sweet? Xxx

[lisalovescake in reply to Twinklybelle]

Hi Twinklybelle,

I'm so sorry I have only just seen your post from months back. Taken me a while to get used to this site and have been having worse and worse symptoms with 1st lap coming up next week. It's a diagnostic lap to remove cyst on left ovary and confirm Endo and remove what's possible.ive had symptoms for a year but probably more when I think of it but put them down to painful periods and believing it was all normal cycle. How are you doing now? Have you made much progress since your post to me? I'm getting nervous now about lap, never had any other op or much hospital visits before Endo began and just hoping they save my ovary and nervous to receive news on fertility xx

[elisepalmer71]

Hi Donna. I went through very similar pains. My endo was on the bowel and I was previously misdiagnosed with IBS even though I had endo diagnosed. I used to end up going to the loo about 30 times a day! The pill helped to manage my symptoms and I used to only break about 3 times a year. Not so easy if

You are trying for a baby though. Managing symptoms is the hardest thing and it took me years to do it. I was very fortunate not to have my tubes affected and am lucky to have two children. I really hope you get the treatment and support you deserve. Sending much hugs and support. We are here to help. X

[Twinklybelle in reply to elisepalmer71]

I go to the loo alot too! It's so nice finding people in the same boat as no one side ever seems to understand!

I guess I have to wait and see what the doctor finds tomorrow, I have a feeling it's on my bowel too though.

Have the fact it's going to affect my fertility again, just feeling very low about it all.

Thanks for your lovely messages hun, I am so glad you managed to control your pain, I may be coming to you for advice in the future xxx

[elisepalmer71 in reply to Twinklybelle]

In the end, I had zoladex and then a total hysterectomy and bso (bilateral salpingoophrectomy) basically tubes and ovaries! Unfortunately my daughter (16 yrs old. Diagnosed at 14 yrs) has it but at least with my knowledge and experience I have been able to help her. X

[Twinklybelle in reply to elisepalmer71]

Oh wow bless you that must have been a big operation?

Aww bless your daughter, I think I read somewhere it can be hereditary? I bore she's coping with her symptoms? Xx