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To think the NHS is not taking my endo seriously

(18 Posts)
Unicorn1981 Fri 13-Jan-17 10:47:22

I had irregular periods all my life until I had my dd nearly four years ago. I was told I had cysts on my ovaries a few years ago and when I became pregnant there was a 6cm endometrioma on one ovary with some smaller ones and some small ones on the other ovary. I remember being told by the sonographer do you know how lucky you are to get pregnant. I was trying for around five years. I would now like another child and have been trying for around 2 and a half years but every time I go through the system of being scanned then being told they won't remove it as it may cause the ovary to be removed. I understand them being cautious but because I don't have severe problems and conceived before they don't seem to want to risk it. I'm nearly 36 now though so I'm wondering if there's anything else I can do. Has anyone else had this form of endometriosis and had successful surgery. Sorry for long post didn't want to drip feed!

Greyponcho Fri 13-Jan-17 11:20:55

You may struggle to get nhs assistance for ivf, which is possibly what you'll need, as you've already got a child. It's crap, but that's how it goes.
Unless the endo is causing you pain/health problems then it's good sense that they wouldn't want to go removing any lesions, due to the risks/further scarring.
Have they at least done a dye test on your tubes?

Greyponcho Fri 13-Jan-17 11:23:26

Oh, and six months is the absolute minimum time of 'trying without success' before they'll step in and start the path of intervention for anyone in the 'existing gynae problems' boat.

Unicorn1981 Fri 13-Jan-17 12:39:20

Thanks for your comments. I do ovulate every month as I can feel the little twinges you get and I usually get a positive test it's just what happens after I wonder about. A work colleague told me about her experience with a private clinic where they removed it all and she became pregnant six months later so it got me thinking. DP has got us all some private healthcare through work but I don't think it covers fertility issues.

Greyponcho Fri 13-Jan-17 13:31:36

You may ovulate but a dye test is where they insert dye in the uterus and see if it comes out of the top of the Fallopian tube (done during laparoscopy), as it may be blocked inside.

Try the endo group on Health Unlocked - there'll be dozens of women in similar situations who may have better answers/advice etc than me.

Also, if they won't remove it, what alternative are they offering? Keep asking and don't take "none" as an answer.
Good luck flowers

rookiemere Fri 13-Jan-17 13:57:34

I have Endometriosis too and we had to give up on having a second DC as a result.

I was lucky enough to have private medical cover so I had two operations and also a 6 month period of zoladex injections to throw me into effectively a medical menopause for a bit to stop the periods ( not fun).

However nothing worked and every time I had a period I was in crippling pain to the point where I was not enjoying the DS I had and was struggling to be at work when having periods which were getting closer in occurrence.

Eventually I had to give up and went on to long term Cerazette as that stops my periods and stops the pain, but of course stops the ability to TTC.

I'd recommend using your DH's healthcare cover to get a consultant referral for your Endometriosis. You may well see the same consultant you would see through the NHS, but they'll have more time to talk through things with you. Provided your health insurance accepts it is related to the Endo, then there is nothing to stop you discussing the Endo as related to fertility when you are there with the consultant.

Greyponcho Fri 13-Jan-17 14:54:48

Rookiemere- have they not offered you pain management instead? That's the route I'm on

DailyFail1 Fri 13-Jan-17 15:51:33

It might be that you have pcos and endo (it's quite common). From what I've been told endo mainly impacts you by blocking your tubes, so if a hsg is clear then it's possible you're either not ovulating or not ovulating mature eggs.

You need to speak to a gaenocologist, get further advice. You could go to a private Gp and request an NHS referral

DailyFail1 Fri 13-Jan-17 15:52:59

Pcos and endo are nothing to do with fertility. They are gaenocological problems and totally covered

SEsofty Fri 13-Jan-17 16:27:22

Have you tried acupuncture?

Lots of anecdotal success with endo and conception

rookiemere Fri 13-Jan-17 17:51:20

Greyponcho - pain management didn't work for me. I had stage 4 severe endo and I just couldn't cope with the pain. My periods began coming too frequently - once every 20 days and last 4-5 days at a time. Plus I was 40 by that stage so decided to give up.

Onlygirljen Fri 13-Jan-17 18:05:14

Endo is a gynae problem and should be covered by private health insurance as such. I had to have a laparoscopy a few years ago for stage 4 endo - was told the NHS waiting list would be 9 months and we had been ttc our second for a year with no success by that stage. Luckily I had private health insurance through work and they had me in within a fortnight. I was pregnant within 3 months of having the op.

I now manage the endo through diet and supplements, which has worked really effectively so far but required a complete lifestyle overhaul. I was told the next medical alternative was either hysterectomy or inducing the menopause with medication, neither of which I was prepared to do if there was any other option.

Good luck, and definitely go private if you can!

ElfontheShelfIsWATCHINGYOUTOO Fri 13-Jan-17 18:31:40

onlygirljen i wondered if you could say what sort of diet you follow for endo please? ie with polycystic ovaries its all about the carbs - cutting them right down etc... thanks

Onlygirljen Fri 13-Jan-17 18:40:31

Elf, I still have carbs but try and make sure they are wholegrain where possible. Have tried to cut out as much processed food as possible, plenty of fruit and veg, very little sugar and little dairy, very little red meat. I'm not perfect at it, but sticking to it for a lot of the time has transformed my symptoms. I'm no longer reliant on painkillers to live my life.

Highly recommend Carolyn Levett's book, 'endo resolved' if you're looking for somewhere to start. She also has a useful website if you're looking for pointers.

Lazyafternoon Fri 13-Jan-17 19:11:33

My sister swears by taking Serrapeptase and on a Paleo diet.

Don't know too much about the Paleo diet, but I've started taking Serrapeptase as can get from Holland and Barrett and worth a try! It's an enzyme food supplement that apparently helps growths like cysts.

maccheese Fri 13-Jan-17 19:14:50

You already have a child so you won't get treated on NHS for IVF as PP have said.

Private health insurance does not cover for any fertility-related treatments or tests as BUPA have told me many times.

Start saving and go private if you want another child soon.

As a guide, we've spent about £14,000 on IVF in the last 18 months.

ElfontheShelfIsWATCHINGYOUTOO Fri 13-Jan-17 19:34:31

only thank you

Unicorn1981 Tue 17-Jan-17 18:51:03

Thanks everyone for your comments. I've looked at health insurance and it doesn't seem to include this so I'm going to see what else I can do. We have a joint appt next month and they've asked dp to do a sperm sample. So maybe they are taking it seriously. I'm going to look into acupuncture too.

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