Stage 4 severe endo and 18years of age.. - Endometriosis UK

Endometriosis UK

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Stage 4 severe endo and 18years of age..

Sarahmolyneux profile image
14 Replies

Hi all,

As stated I’m 18yeas old I only got diagnosed with endometriosis on the 15th may 2017. Both ovaries are stuck to my Fallopian tubes and my left Fallopian tube is stuck to my pelvic floor. I have also suffered with reoccurring horrendous cysts from them bursting to currently twisting at 9cms big.

I’ve been put on all contraception to try and relief the pain, nothing.. on all sorts of pain relief to try and relief the pain, nothing, even my pain clinic doctor doesn’t know what to do.

I’m currently on prostrap Injections 3.75mg (every three months) I also had my coil removed last Tuesday 19th dec 2017 having it removed gave me instant relief and once I had a normal period I’ve been okay.

The reason why I am asking for advice is one thing my consultant wants me to do is have a baby because although I’m okay now my body is going to produce more and more endo and with that cysts and to be honest I’m petrified and also so tired and drained of it controlling my life.

I’ve been in a relationship for two years now and recently engaged, amazing relationship with family and everyone is supportive of me having a baby, but am I making a wrong decision I’m going the direction of trying for a baby to cure my endo and will it actually work?

Please if someone’s been in my shoes before can you please help?

Thankyou xx

14 Replies
Stresshead24 profile image

Oh what a decision. Can you not have surgery to remove the endo. I have recently had this surgery (I'm 36 tho) and the surgeon was happy he had managed to remove it all. It will grow back but no one knows how long it will take to grow back. They also told me to try and have a baby to delay it coming back but from my understanding a baby won't cure it it just suppresses it during the pregnancy 🤔

Only you can really make the decision but best wishes what ever you decide to do. Xx

Sarahmolyneux profile image
Sarahmolyneux in reply to Stresshead24

Hey, thankyou for messaging back so quickly..

In may that’s what they wanted to do laser it all and then because he wasn’t able to with how much there is he’s given me the option to have a sterilisation so once all the endo that I already have is gone itll all stop but I come from a big family and that’s just not an option so he wants me to have a baby hoping that the hormones go so high that it’ll kill it all off!

Thankyou xx

Stresshead24 profile image
Stresshead24 in reply to Sarahmolyneux

Totally understand that you don't want sterilisation aged 18. Is this an endo specialist that you have seen. If it isn't please look up BSGE centres. I travelled over 2 hours to a hospital to see a specialist to have surgery rather than my local hospital as the specialists can do so much more. I had stage 4 .. frozen pelvis 5cm recto vaginal nodule 8cm right ovary and 4cm left... They were so big they were twisted and touching (kissing ovaries) plus lots of other bits and it was all on my bowel too so they shaved it off my bowel. This was all removed and tubes flushed in a 3 hour key hole surgery. Definitely get a 2nd opinion. Are u in the U.K.?

Stresshead24 profile image

Not sure pregnancy hormones kill it off either and you want it cut out not lasered off the surface from what I've learnt/read up on. I'm sure one of the lovely ladies on here will know more than me but I've read alot in the last few months before I went ahead with the surgery xx

MissyTx profile image

Hey Sarah, I am in a slightly different situation however can probably give an unbiased response. I have grade 4 endo, was diagnosed 4 years ago. I was told we would never conceive due to scar tissue and had two laparoscopic surgeries that they said were unlikely to improve things other than the pain.

4 years on I have a beautiful 12 month old baby. Being pregnant was probably the best I ever felt. Less pain, and felt generally great other than morning sickness.

I was tricked into thinking my endo had pretty much gone and I had escaped the evil witch!

However.....13 months on my endo has returned faster than ever and now spread to my bowel. I am now waiting for major bowel surgery in 3 weeks time to try and control the pain and remove enough to see if we may stand a shot at a second preganvy.....although the first was a total miracle in my eyes.

Although everyone is different, endo behaves differently in each patient. My MRI scan revealed I have a very aggressive type of endo that will only ever improve with a total hysterectomy.

Wait until you are emotionally ready for everything that comes with having a baby before being fooled into thinking it is a cure.

Birth results in scarring of its own and if you suffer form endo the chances are it will return quickly after birth as and when your cycle does.

All the best xx

Bdgjdjd profile image
Bdgjdjd in reply to MissyTx

Did you have chocolate cysts when you got diagnosed?

joreilly profile image

I am actually appalled that a consultant is telling you to get pregnant at 18 and would personally be looking to make an official complaint. This isn't like telling you to give up dairy or go running.

Please get yourself referred to someone else and get a second opinion, preferably from one of the bigger bsge centres.

in reply to joreilly

It did sound like extreme advice to me suggesting she should have a baby.

MichelleOlivia profile image

In hindsight I wish I had started trying for a baby at 18, although I'm not old (28), we have been ttc for 3 years now. I only discovered I had endo when I came off the pill to start trying and started with pelvic pain and irregular cycles which I never had before. I've recently had excision surgery, and hoping that will help things along. But if his advice to have a baby is to cure your endo there isn't enough research to confirm this is the case, my understanding was it can starve the growths, but it doesn't get rid of it completely, and likely to return after delivery. I would also say, I was pregnant last year that ended in miscarriage (there is research about endo increasing the risk of miscarriage), and my pain levels were increased during the 9 weeks I was pregnant. Everyone is different. Xx

Hazel173 profile image

Before getting pregnant I would suffer with endo symptoms but it got put down as ibs. While pregnant I never once had abdominal, bloating/diarrhoea unless I ate fruit or veg. After my pregnancy the symptoms came back with a vengeance and have been unbearable, also could still not after 4 years eat fruit or veg without terrible diarrhoea. Had my operation last month and while its done nothing for the pain I am able to eat fruit again. So sometimes pregnancy can help but thats not the case for everyone and in the long run it made my symptoms worse. I did have my child quite young but i dont reget it in the slightest as even at 19 it took me a year and a half to fall pregnant and I might end up being infertile in my 30's because of endo. Having a child is a big decision and commitment, you should only do it if your ready. Is your partner ready for a baby too? Have a think about if you want to fall pregnant because you both really want a baby or if you would only be doing it to help with endo. Also try and imagine that you are 30 and get told you are infertile now, would you feel devastated and regret not doing it sooner? X

AJJ123 profile image

I’d weigh up what you want out of life first, do you want a career? If you do, then don’t be pushed into having a baby before your emotionally and financially ready. I come from a large family of women who have lots of children. I don’t personally want that, two will be just fine if I get lucky a second time around. My advice would be to see a specialist and try to stabilise if that’s possible the problem you have with endometriosis before jumping into anything. Make the right decision for yourself xx

AJJ123 profile image
AJJ123 in reply to AJJ123

Oh and as for sterilisation ... hell no!

sanchia46 profile image

18 is quite young for a baby. I would suggest freezing your eggs.

Cheetara79 profile image

You poor thing, what a decision to make.

Your problems sound similar to mine and I'm also going to ask to have my coil removed as its not helping now.

Lots of advice from the lovely ladies on Healthunlocked, seek advice from a BSGE consultant. Have you looked into acupuncture a friend suggested it to me.

All the best.

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