Endo battle and trying for baby

[Holleymuzz]

Hi all

I have endomitrios. Iv recently come off the pill in a hope to have a baby with my partner of 7 years.

As with many women, the battle to be listened too is hard, long and tiring not to mention very depressing.

Anyway I’m under the care of Portsmouth gynaecology specialists. I’m waiting on mri results for my bladder and bowel as these were where my endo was found. Iv had increased symptoms and pain since my diagnosis in November 2016.

So I’m 9 days away from the start date of my period & I’m praying the road to conception is smooth and quick! Unlikely but I can hope right?

I wondered if anyone fell pregnant quickly? Was there a lot of pain during the pregnancy due to endo? How was the labour?

Would appreciate any stories or advice

Thank you everyone xx

[Samid76]

Ahh fingers crossed for you .. we too have been trying for another baby, strangely my symptoms only seemed to appear once we decided we wanted another baby which is strange I had been on the pill since I was 16 came off it to have our first baby fell pregnant straight away, they think the pill masked my problem and because I hadn’t been off it very long and then fell pregnant it didn’t cause any problems .. pregnancy was healthy and pain free so was the labour apart fromwhst was to be expected .. now I await my assessment on Thursday with a hope of getting to the bottom of what’s wrong and the extent of the endometriosis I’ve been off the pill for a year now as i just didn’t want to be on it anymore unfortunately it seems it was long enough for the problem to get progressively worse over the last few months but I’m hoping I have a positive outcome and I hope the same for you 😊

[Holleymuzz in reply to Samid76]

Ah that’s great news on your first bubba and hopefully a second follows swiftly!

Thank you for replying to me so quickly. Do you know where your endo is? And what stage your at? I was told in November 2016 it was only mild so wasn’t the cause of my pain 😲. Discharged and stayed on the pill because I hated my lady organs and didn’t want to have anymore children, I have one who is 10. Xx

[Samid76 in reply to Holleymuzz]

My problem literally just appeared in September last year I’d been to the doctors earlier in the year as I’d noticed a little nodule had appeared inside my belly button, only to be told by the gp that it was weird and to keep an eye on it, I only noticed it as it has seemed to bleed that month with my belly button, I’d didn’t bleed agaín after that so didn’t really give it a second thought, it was only in September that my belly button started getting really sore usually the third day into my period I went to the doctors again who straight away mentioned that they thought it was endo related but only due to my family history otherwise I’m not sure they would’ve had a clue, I was referred for an ultrasound as the doctor wanted to rule out ovarian cysts and to see if they could find any endometriotic tissue inside my ovaries but all came back clear thankfully they even managed to pick up that i was ovulating at that time and I’d apparently had a large egg releases so at least all that looked healthy had clear blood test results too so they think it is centred around my belly button but I have to say it is the most excruciating pain last month was the worst it’s ever been the inside of my belly button swelled up so much and the pain was honestly like nothing I’ve ever experienced I am dreading it happening this month 😞 I have an appointment for an assessment on Thursday which I got by pure fluke after discovering by accident that they had mistakenly booked me in for a completely incorrect procedure on my womb 😫 no idea why that would’ve been a shock expecting to pop to the hospital for an assessment only to end up having a hysteroscopy ... terrible mistake on the nhs part, but has worked in my favour as now have a last minute cancellation appt partly looking forward to it partly terrified as to what they think this could be or how bad I have everything crossed 🤞 I was hoping I’d have fallen pregnant instead as the doctor seems to think it would solve everything not sure how my swollen purple belly button would cope with that though 😂😊

[Holleymuzz]

Do you know what last time I went to an appointment I was talking to the specialist and he did an assessment on me then went back to my notes and looked utterly baffled I asked what the problem was, in my notes it had that I had endo and had had a complete hysterectomy! He said well Iv just felt all of your reproductive organs!! I was gobsmacked! Even more shocked that they said the endometriosis I had was to ‘mild’ to be the cause of my pain?!? Like hello do these people even know about this disease? It’s well documented that the stage of the disease doesn’t correspond to the level of pain and symptoms, completely discharged told to go on the coil ( was already in my notes that I wasn’t compatible with this or the implant due to a cyst tumour being removed in 2015 they thought was due to the implant) . God what a strange way to discover this condition! My belly button is unrecognisable due to 4 ops in 2 years through my button xx

[Sarahxnxhannah16]

Hi, I have stage 4 endo, a severe bicornurate uterus and I’m hypothyroidism, I have 3 beautiful babies 9, 4 and 2. I’m 32 diagnosis at 21 but suffered from age 10, my 1st tried for few yrs wasn’t happening ended up with a fertility nurse who says my ovulation levels were so low my chances were very small I was sent for a lap to see what was causing my pain and infertility and I got my diagnosis of endo, I was put on the highest does of clomid after 7 cycles it happened and I had a fantastic pain free pregnancy it was bliss ave birth to my tiny girl sep 2008, was bk under the fertility nurse April 2013 and I was put on thyroxine meds and 2 months later I found out I was pregnant naturally gave birth to another little girl feb 2014 and again another brilliant pain free healthy pregnancy and even after the pregnancies my endo pain was getting better I still had pain but it was bearable, April 2015 I found out I was pregnant again unplanned none fertility nurses, healthy pregnancy little boy dec 2015 but from the day he was born till now I have been in constant pain everyday, leg pains, back pain, hip pain, pelvic pains, I had lap dec 2016 where they found stage 4 endo all over my bowel and bladder, scattered around everywhere and wrapped around uterine artery and blood vessels my bladder is stuck to my abdomen wall, they couldn’t laser of anything as It was too risky, I’m now under an endo specialist in Edinburgh who says I’m a mystery to him he can’t believe I have 3 kids with the state I’m in with all my ailments I shld not have any, my bicornurate uterus is very severe with that on its own makes it hard to keep a pregnancy, sadly tho there’s so much damage from the 3 pregnancies my uterus isn’t doing great and I’m awaiting my date for hysterectomy I fought for a whole yr not to go down that road but he says it’s time for it to go I did fight for to keep my ovaries, il also be needing open surgery to fix my bladder and I’m aware he can’t get it all so in time it will be bk, right now I take cocodomol, oxycodone liquid and oxycodone 12 hour tablets for pain and they don’t completely get rid of the pain, I’m down for 2 specialists to do my op so that’s wats holding everything up for my op, fingers crossed for u, try not to think about babies and pregnancy too much it seems to slow it down when ur desperate for it too happen. Good luck xx

[Holleymuzz in reply to Sarahxnxhannah16]

Also just noticed we are the same age and gave birth to our daughters in same year 2008. X

[Holleymuzz]

God bless your heart! You must suffer so much! How do you cope with bubba and the pain? I have 2 other chronic conditions that all seem to tag team eachother and take turns flaring up, if I’m really lucky all 3 do at once.

On a scan once during ovulation they said my left ovary in the main releaser of eggs, at the time I had 2 follicle cyst ready to pop. X

[Sarahxnxhannah16 in reply to Holleymuzz]

I also have pcos, my sons 2 years with us have been the hardest ever he was a bigger baby than his sisters so trying to carry him around till he cld walk was excruciating, I haven’t managed to do all the fun things I used to do with girls like throw him up n bouncing around with him I walk with a small limp now as my right side is to painful to straighten my leg I feel like if I do straighten it I’m going to rip of my ovary, when my hubby was at wrk and I had to take him up stairs I wld sit on my bum and go up that way, I cldnt walk up stairs and carry him, my middle one was only 22 months when her brother was born so she was still wanting carried as well, there is still days I just leave them in pjs n I have to lay on couch. Thankfully my hubby has seen me at my worst and understands how bad it is he doesn’t expect me to have the house spotless and everything done, he does a lot when he comes in from wrk and sees to kids and gets me hot water bottles x

[Holleymuzz in reply to Sarahxnxhannah16]

Well I can only hope I cope as well as you. Good luck with everything I shall keep people updated x

[Sarahxnxhannah16 in reply to Holleymuzz]

It's just something u have to do learn to live with it and find ways to cope, hope it happens for u xx

[Cblowfield]

I want to give you some hope! I have my first lap in February of this year. It was severe but mainly on my bowel and bladder and superficially on my uterus etc. If this is also the case with you, endometriosis shouldn’t cause you issues with conceiving as it’s not severely on the parts that are necessary here. We fell pregnant immediately (using the digital ovulation kits massively helped I’m sure and lots of sex on those four days! ) on the first month of trying. We sadly miscarried twins a few weeks ago but I have hope when we try again in my next cycle that conceiving is as easy as it was the first time around. Good luck 😉

[Cblowfield in reply to Cblowfield]

These should be HAD my first lap in February of this year!

[Holleymuzz in reply to Cblowfield]

Hi 👋🏻

I’m sorry to say that this post was 2 years ago. I’m currently 5 weeks post surgery for a full hysterectomy. My uterus was severely effected by adenomyosis. Iv had 2 operations since this post. Both 5 your long. First one showed adenomyosis was severe, I had stage 4 endo on bowel and rectovaginal. Then the latest surgery for hysterectomy was another 5 hours because my bladder had fused to my uterus. X

[Holleymuzz in reply to Holleymuzz]

Hour*