This is so hard

[Sunshine_1976]

I guess I'll tell you a bit about what's happening with me. Any advice would be great.

I was diagnosed in January this year. Stage four 'aggressive' endo. Like most I had many symptoms and had been back and forth to the doctors. I am 38 soon to be 39 and I was concerned about my fertility - so asked for a check up. This is when they found a cyst - 8cm by 5cm

I had a larposcopy and they found a chocolate cyst on my left ovary. They drained it and then burnt some lesions off.

My main aim was pregnancy so the consultant said to keep trying naturally and hopefully it works.

After the operation I was in a lot of pain in the entrance of my vagina area - on the right side.

I always got pain there at certain times in the month and when having sex.

Anyway the pain was much worse and continuous - so I had an operation and there were two endo cysts. They have now been removed.

My consultant told me it's very aggressive and suggested medication for fake menopause. I was reluctant cause of the side effects and he was too because of my age and wanting to get pregnant. So he is referring me for IVF treatment.

My other symptoms haven't got any better. Fatigue is the worse - since I am naturally a hard working active person. Also the constant need to urinate and pain at differing times in the cycle. I also get sickness, headaches and migraines a lot. I do have period pains before and during period - but not excruciating. I get very low and find it hard to cope at work - which isn't me.

Also the symptoms mostly occur the same day of each cycle. (My cycle is 23 days.)

I was concerned recently as my symptoms haven't gotten any better and the peeing sensation and fatigue had been very bad as well as the thrush. So I asked my doctor for a scan of my pelvis - this was just this week Monday.

They said the endo cyst on my ovary is back at 6.5cm - it's grown that much in just four months.

Obviously I am now very concerned and have an app with consultant next week. I am still awaiting app for IVF too.

I'm guessing another operation and then IVF if I'm lucky.

IVF is super scary too - taken me a few months to come to terms with that happening.

Thank you.

[Vic-ki]

Hi Sunshine, oh, you really are having a difficult time.

I understand completely your symptoms as mine are fairly similar. I havent yet had any laps or ops to remove any cysts, as i'm awaiting yet another referal back to gyny. I am also TTC, I'm 32 and also worried about fertility.

The only advice i can give you, is that i have had the menopause treatment about two years ago. I had 6 months worth of injections, although i now cant remember which ones. I had my monthly still for the first 2/3 months of treatment, but they did stop my periods for about 7 months. I was lucky and had no side effects, maybe a few headaches initially and felt warmer, no hot flushes! But his really helped slow down my growths.

I then continued taking conceptive pill back to back, 3 months at a time which Im certain helped aswell.

Now though Ive stopped all treatment to hopefully fall pregnant, Im finding my symptoms are coming back rather quickly!

I also have alot of pain, before during and after. I have problems with bladder. I become unable to control my bladder, and i have to wear a pad! but only around that time! very annoying and embarassing! and so much pain, cramps and headaches!

I just want to wish you well, and hope you fall pregenant naturally qucikly

Vicki xx

[Sunshine_1976 in reply to Vic-ki]

We have to hang in there and be strong.

Thanks for the reply. I wish you all the best.

X

[confusedandworried]

Hi can I ask if you are under the care of a general gynaecologist or an endo Specialist?

Endo, particularly severe endo, really needs to be treated by an endo specialist as per NHS guidelines. You have the right to be referred to any one of the nationwide BSGE accredited endo centres which can be found on the following website by clicking on the tab labelled "Endometriosis centres" then "BSGE Accredited centres".

Endo is complex and unfortunately general gynaecologists tend to lack both the skill and expertise to (a) recognise endo in its many different forms and (b) thoroughly excise it (ie cut it out).

Burning endo, particularly severe deeply infiltrating endo is ineffective as all burning/lasering does is burn the top layer not remove it from the root meaning, much like a weed, it's more likely to grow back.

Furthermore cysts need to be carefully drained and excised preserving as much of the healthy ovarian tissue as possible.

Such excision surgery takes a lot of skill. To put it into perspective I have had 4 treatment laps (& 2 diagnostic) since my symptoms began 20 years ago and 3 of the treatment laps took under 2 hours. The last one undertaken recently by a BSGE accredited endo specialist took 6 hours!

General gynaecologists expertise lie in the reproductive organs but unfortunately endo can and often does affect other non-reproductive parts (eg bladder, bowel, peritoneal lining etc) so they don't tend to (& shouldn't!) address endo in these areas meaning symptoms continue.

Sadly hormonal based treatments are not usually successful with advanced stages of the disease either. At best and for the "lucky" ones they mask the symptoms but the symptoms return when the treatment stops because the endo is still there - such treatment will not shrink advanced endo.

I hope this helps, Jo x

[Sterou]

Hi sunshine - very similar story ( am also 39) but mine happened 10 years ago when I stopped the contraceptive combined pill to have a break... This is when all the symptoms started which I mistakenly took for IBS. Few months later and a chocolate cyst measuring 9cm was removed via a lap - I was asked to get pregnant straight away but was in the middle of getting married... What helped me at the time was going back on the pill - it suppressed the endo and the growth was not so drastic (3.5cm in 6 months) my cycle was also 23 days. It did not take me long to get pregnant naturally once married (3rd short cycle) and though my left ovary was the one potentially damaged, this is the side I got pregnant on! My cervix is also massively tilted on my left, causing me pain while making love. After my 2nd pregnancy - and a morena coil fitted that lasted 4 years - only this year really -10 years on that I am seeing some signs again. Once again I am back on the combined pill and the symptoms are not bad ( am tired and a little low at times but wondering if it's not just related to being nearly 40!!)

What I did try which was a terrible experience - maybe it's me or me with endo - but the POP pill made me feel horrible, mild headache, pains, depressive! I think to be avoided as it does not even suppress the endo ( but was told better for our Age).

I know it's not much help about getting you pregnant - I remember that I had to follow instructions on how to get quickly pregnant as cycle was short - I was not ovulation around the 14 like most people.

Best of luck!!!

[Jellybutt]

I had ivf (aged 37) before I was diagnosed with endo, its scary and tough emotionally but I now have a 7 year old daughter and so glad we did it. Sorry you are having such a tough journey - good luck!

[Lyzzibeth]

I too have severe endometriosis and am considering IVF. I'd be interested to know if things worked out for you xx