Stage 4 endo, advice needed including abo... - Endometriosis UK

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Stage 4 endo, advice needed including about fertility. Had laparoscopy on Thursday.

Sjg1991 profile image
8 Replies

Hello I have suffered for years with suspected endometriosis. I finally was referred to a specialist this year following going private for fertility assessments as my gp wouldn’t refer me for further investigations after a year trying. The fertility assessment showed I had a 7cm cyst on my left ovary. I saw my specialist and he advised to have a laparoscopy to remove this and suspected endometriosis which he removed what he could during the surgery along with the cyst. I have been diagnosed with stage 4 endometriosis. I had my laparoscopy on Thursday just gone. I do not know whether we should start ivf as soon as possible, try naturally for a little longer. Does anyone have experiences/advice they can share? Anyone have any advice regarding things I can do to improve my fertility now? Advice around nutrition/exercise? Any advice for recovery from the laparoscopy? Any information would greatly be appreciated as I am struggling to process it all and really worry about not been able to have a baby.

Thanks in advance

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Sjg1991
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Lapinblanc88 profile image
Lapinblanc88

I can help, I'd need some info first

How old are you

How long have you been trying

Any previous pregnancy/miscarriage

What was your laparoscopy diagnosis

Did they excised your cyst/was it an endometrioma

Gosh I feel like a doctor....☺️ I wish our doctors were more educated around this serious issue.

Sjg1991 profile image
Sjg1991 in reply to Lapinblanc88

Thank you so much for taking the time to help me. I wish they did also!

I’m 29 years old, been trying to conceive for around 1 and half years, I haven’t had any pregnancies or miscarriages. Yes it was an endometrioma and they removed this and the capsule.

Thank you 😊

Lapinblanc88 profile image
Lapinblanc88 in reply to Sjg1991

Ok time is on your side.

If I were you, I would try again for a year now that you had hopefully removed some adhesions and the endometrioma ( I hope the doctor was from a bgce clinic)

You have what they call the 6 months golden window where you're most likely to conceive.

Have you had any fertility tests? amh, ovarian reserve ( very important), FSH tested?

Diet: please remove gluten from your diet for at least a month and see how you feel.

Vitamin d, b6, b12 and folic acid

You need to ask your surgeon to see a copy of the surgery conclusion. You can send it to me if you want to.

Sjg1991 profile image
Sjg1991 in reply to Lapinblanc88

Thank you so much, he did mention a risk of it coming back so I guess it’s timing it right about trying naturally but not risking issue with the ivf. I’ve read quite abit about what you describe as 6 months been a key time. How would I find that out? He’s quite specialised from what I’ve read which is why I didn’t stay with my local hospital. I had them pre surgery

Amh level -16.4 pmol/l

Antra follicle count 15 in right ovary and there were non noted in my left as this is where the endometrioma was.

Do you know if the well women has enough in terms of the recommended daily amounts?

I do have a copy but want to go through it with him as don’t understand it all.

Thank you so much

Lapinblanc88 profile image
Lapinblanc88 in reply to Sjg1991

Your AMG level is a bit low for your age.

I'm really surprised that your left ovary is not producing any follicules!! 15 on the right is fine.

Re golden window I read many studies confirming this. The mechanism is not really well known

Order some ovulation kit and check when you are ovulating. You should have sex BEFORE and during your ovulation date. Every two days from 6 days before your ovulation date.

Try for a year. After that please do not wait and see your gp for a referral. It can take more than a year to start treatment.

Your BMI needs to be below 30 for NHS just in case...

Sjg1991 profile image
Sjg1991 in reply to Lapinblanc88

I hope the surgery doesn’t drop it to much.

That’s interesting though and makes me hopeful. Fingers crossed 🤞

Thank you for your advice, do you know how to track menstrual cycle to see where I am after the laparoscopy?

Many thanks

Twinsmum44 profile image
Twinsmum44

Hi just wanted to wish you luck on your journey. I was diagnosed with endometriosis over 30 years ago following a laparoscopy that was investigating my infertility. Following this I had a number of failed IVF attempts and Finally got pregnant with IVF and have a beautiful daughter and son( twin). There is always hope ..... wishing you success

Sjg1991 profile image
Sjg1991 in reply to Twinsmum44

Thank you so much. I’m glad to hear you had a good outcome on what sounds a very difficult journey.

😊😊

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