Anyone felt they had to tell a white lie ... - Endometriosis UK

Endometriosis UK

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Anyone felt they had to tell a white lie for referral of fertility testing so they knew their chances of conceiving.

Zolta profile image
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I think that Individuals diagnosed with endometriosis and other reproductive disorders should be prioritised with fertility testing, so that 'trying for a baby time' should be reduced 1 year, not 2 years, as our reproductive clock is ticking away faster than those without reproductive issues. Am I wrong or narrow minded in thinking this?

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Zolta profile image
Zolta
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nuttermutter profile image
nuttermutter

Having endometrisosis just isnt fair ... FULL STOP. Wanting kids so bad ... well I only had a year and a half and a miscarriage, quite insignificant comapred to a lot of women.

I wouldn't blame anyone for telling a little white lie, to help with getting refered. I am only presuming that decisions are made according to age and severity, again pressuming, that it is upto the specialist to slot you into the list, with lots of differing factors.

Would you think it was unfair that someone not diagnosed has to wait extra long, what I mean is that possibly by the time they get there at the front of the queue they find out they have endo et al, and have to get that treated first before they can be helped further. So at that stage the process may take longer, that wouldnt be fair. Not everyone has the diagnosis, pains or symptooms till they start trying and then get referred.

I am 43 and 4 weeks today shall be having a hysterectomy, I have 3 girls (16,17,21!!! eek I dont feel old enough mentally ;) ). What if I didnt have my children and had started trying in my mid thirties? I until going on Zoladex in July and having a couple of 'episodes' since being forty, had regular periods and no symptoms. They have gotten more serious since hitting forty and now am looking at a total and a chance of part of my bowel removed, the damage is extensive and has probably been getting worse over a number of years.

Zolta profile image
Zolta

I don't think they should have to wait extra long, I believe that if someone is undiagnosed and been trying for a baby for only 9 - 12 months but has chronic pain/very bad periods they should be investigated asap, and they should have fertility tests done along with investigating the cause of pain even though they have not been trying as long as 2 years.

However if a couple have been trying for 2 years or more and have not yet conceived and have no pain or symptoms, and are then diagnosed with endo or other reproductive disorder as the reason for not conceiving, I think they should be treated asap and then after treatment try for a baby for 6 months, then be put in the front of the que for ivf.

It often takes so many years to get diagnosed with a reproductive problem especially endo as GP's always seem to dismiss this disease in young women because they are, they say, too young! But nobody is too young to have a disease. I have had endo pretty certain since my periods started at the age of 13 and a half, was in excruciating pain every month and doc was very surprised that mefenamic tablets not work alone and had to take co-codomol along with the NSAID. Went on contraceptive pill at age 16 because periods were so bad I was with a hot water bottle without painkillers one month because wanted to see if pain was in my head and my mum said I sounded like I was in labour, at age 15! If someone is getting any symptoms/pain worse than the average period pain (paracetamol/ibuprofen should be all that is needed) then I think that women should be offered investigation with mri and laparoscopy straight away and not fobbed off with painkillers like I was.

I had been trying for 1 year and no baby, and then diagnosed with endo, treated with Prostap for 3 months then given a time frame of 6 months to try and conceive after treatment ended and cycles returning and if no conception then be put on ivf list. Luckily I fell pregnant in the 4th month of trying after Prostap. They only offered ivf after 6 months of trying after treatment though because I said I had been trying for a baby for around 2 years,. If I was honest and said 1 year, I am pretty sure I would not have had the HSG dye test to see if tube was clear and they would not have offered me ivf after trying for just 6 months after treatment.

I think that being diagnosed after 2 years of trying without symptoms all their life then finding out they have Endo and/or PCOS et al, then they should be on treatment after diagnosis, as like in my case, sometimes treatment is all that is needed for the body to heal and endo to shrink and then a 6 month window of trying should be offered. Then ivf offered afterwards. However depending on the extent of severity of the endo the treatment length and time frame should be adjusted.

Sorry for rambling on... just wanted to get my thoughts out there. The NHS system is somewhat bad in making their own rules depending on the area in the UK we live in, like the post code lottery of ivf treatment offered on the NHS and how many cycles are offered. And the waiting lists, I had to wait 3 and and half months for my laparoscopy but should have been prioritised in my opinion because a week before I was put on the list my cyst ruptured, and in the meantime while waiting for my cyst in my ovary to be drained during lap, it ruptured 2 more times pretty much once every 30 days had to call the ambulance and taken to A&E because so much pain as it ruptured a day before my period was due on.

One has to do their research into how long one has supposed to be trying before they are offered fertility tests. I do think it is wrong though if a woman who has no symptoms or pain lies to the GP saying they tried for 2 years when they have only been trying for 6 months, they should wait at least a year of trying first, especially if they are only in their 20's. And/or they should also get their partner's sperm tested if trying less than a year - but again, that is a '2 year trying' window for the man too... so even if the woman has been trying for 2 years with a previous partner and was with a new partner and trying with them for a year the GP will not give the man a sperm test kit because he has only been trying for 1 year with his new partner. Know this as the GP was reluctant to give my partner a testing kit but only because I said he was trying with his ex for 1-2 years a couple of years ago before we got together did she agree to write out a sample request from and give it to us!

Good luck with the hysterectomy I hope this will relieve the endometriosis.

nuttermutter profile image
nuttermutter

What a horrid time you have had of it.

I agree, if you are young enough to wait and dont have symptoms you shouldnt lie, but hopefully they dont get a chance to push in th equeue if they have been on the pill, as the doctor would check their notes.

My sister and aunty (not blood related) had endo both since they started their periods. Both managed to conceive naturally, with part or whole ovary removed and a few laparoscopies, one at 39! I didnt quite know the significance of their plight(s) until I was suffering and had read up on endo, iyswim. They had each other to chat about it and as I diidnt think I had it wasnt wised up to the signs, eventhough we all three met up regularly.

Thanks for the good luck

I return some Good Luck to you and all the other ladies best wishes, especiallly those trying to conceive ... <3 :)

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