Endometriosis- positivity please.

[niqnet1]

I have been symptom and pain free since my lap for stage 4 Endo in 2009. Symptoms have come back full force since weaning my second child (massive regrets!!). I'm due to have a lap on 11th July with Endo specialist(thanks to hubby's private health care).
My mental health is taking a battering due to being in pain everyday and feeling like a bad mum not being able to play like I use to. I joined a informative fb group but it is full of horror stories and it's making me feel worse so headed here for what I hope is a more positive view on Endo.

Do any of you have it and find symptoms are better after laps? Or have you (like I did) had years symptom free after laps?
Anyone living a "normal" life without masses of pain every day?

Attila- if you are still about- how have things played out for you over the years?

I was fine after 3rd child and multiple previous laps.

However, early menopause has changed my life. No pain ever.

I'm 1 year post-lap with an Endo specialist. I'm a LOT better than I was pre-surgery.

It was my second lap, the first was just to diagnose and drain the cyst. Second one went all out, removal of stage 4 endo everywhere including bowel, adhesions, large cyst, frozen pelvis freed up.

I won't lie to you - I'm not 100% pain free. I'm aware it's 'there' when I twist or lift stuff. But the constant grinding pain has gone, I lead a normal life.

I joined an online support group but I felt it was dragging me down.

Good luck

Whereabouts in the country are you? EndoUK have support groups all over and they can be a wealth of support and understanding.

www.endometriosis-uk.org/find-local-support-group

I had excision surgery for stage 4 in 2010. Was largely symptom free until 2015 when the pain returned. Decided to pursue TTC rather than more surgery and had DS after one round of IVF in 2016. Had another lap with an excellent endo surgeon when DS was 9 months old. No endo was found, just extensive adhesions. Division of these has given me excellent symptom relief other than the midline pain I get with my periods. Once that gets bad enough I'll have a hysterectomy and removal of both ovaries but I'd like to put that off for as long as possible.

I had a total pelvic peritoneal excision in 2014 (also a hysterectomy but that was for adenomyosis) and I am 95% pain free, so yes, you totally can get better! The 5% of pain I get is from an ovary that I think might have grown another cyst, so I might have to have that taken out at some point. But it's nothing like the debilitating daily huge amounts of pain that I used to be in, and that it sounds like you are in now. I also have/had stage 4 and when it was at its worst, I was basically bed ridden. Try not to beat yourself up - it's a disease, not a moral failing, and it's utterly draining and horrible.

I think the support groups by their nature tend to attract people with ongoing problems, rather than people who have managed to resolve their illness. The problem is that it's so often mismanaged and under treated, and even the specialists are prone to think that women exaggerate.

Sending you lots of hugs and wishing you a pain-free life after your lap. Good luck.

Jamandbread- I'm in North Wales.

Pooch and un- google - I completely forgot I had Endo after I had my first child. I felt so healthy and had no pain etc so I didn't go near any Endo forums/groups etc so you are right. Generally only people who are struggling access those things. Hence the horror stories!

Pooch- did you see Mr Trehan?

Everyone else- thank you for replying. I was crying typing this morning as I was worried people would reply and say it never gets better.

Hi niqnet

How kind of you to remember me

My problems with endometriosis started upon onset of menses at 14 and my teenage years and 20s were pretty much awful in terms of pain and symptoms. I had many of the classic symptoms associated with this, I realise that now as well. No-one knew what was wrong with me and I struggled on for years. I was only glad that my periods were so irregular (but that was due to PCOS as I later discovered as well).

I am also a lot better post surgery and have now gone a decade or so of being symptom free after one episode of flooding a couple of years post the lap op.

Do keep us posted and would wish you all the best re your forthcoming surgery. Would be happy to give you a list of questions to ask the gynae.

A tip; ensure asap that you are given a follow up appointment a week or so post lap to discuss the findings with the consultant or other member of the team. No-one should talk to you about this when you are in the surgical recovery room; its poor practice apart from anything else.

www.endometriosis-uk.org/ is a useful website.

Thanks Attila. Yes, please do let me know what I should be asking my consultant.

I'm glad you are doing well. 10 years is excellent.

Niq I'm in the North West, I was treated at Arrowe Park on the Wirral by their endo specialist. They were amazing. PM me if you want more info.

Hi niqnet

Some questions to ask them:-

Were your ovaries and fallopian tubes healthy?
Did you have an ovarian endometrioma?
Did you have many adhesions?
Was your bowel or bladder involved in the disease? (endo can get there as well)
What further treatment is recommended

To this list add any questions you may have

It is a joy indeed to be pain free now.

I did see Mr T. very expensive but it seems to have done the trick. There are other equally talented surgeons but at the time I was so desperate that I wasn't able to research as much as I'd have liked to.

Since you have previously been in and out of stage-4 Endometriosis, some of this may not be relevant to you, but I would like to offer you some positive suggestions:

What if your Endometriosis is caused by things that you eat, or don't eat ?

Here are some questions to ask your doctor about Endometriosis:

• What causes it ?
• How will looking at it and scraping it help me get better ?
• What can I do to stop it recurring ?
• Could my illness be caused by things that I eat, or don't eat ?
• What can I change about my diet and lifestyle to help my body repair itself ?

Search online for "anti-inflammatory diet"
This and the suggestions below may help to reduce the pain

Maybe search for www.BANT.org.uk and interview 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one to work with

Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis

• Increase your Vitamin D
• Increase your Omega-3
• Reduce your Omega-6

Search for more about Endometriosis and Inflammation here:

www.vitamindwiki.com/Endometriosis+treated%2C+and+perhaps+prevented%2C+by+vitamin+D+and+Omega-3
authoritynutrition.com/optimize-omega-6-omega-3-ratio/
chriskresser.com/how-much-omega-3-is-enough-that-depends-on-omega-6/
draxe.com/omega-3-foods/
www.greenvits.eu/blogs/news/30323331-what-to-do-about-endometriosis
www.expertomega3.com/omega-3-studies

Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up

Are there foods that make your Endometriosis worse and those which help ?

.

I have endo and have had 2 lap.

I've had a lot of success using lavender oil (about 4-5 drops of essential oil in a small amount of carrier oil) - I just slap it on all over my abdomen in the morning and at night when in pain and it works brilliantly.

I can't explain why or how it works, but it does for me - I've gone from max doses of paracetamol and ibruprofren having no impact on the nausea-inducing pain, to having to use no pain medication at all over the last 9 months.

I know many will be sceptical - I was too, but thought it was worth a go, and am so glad I did!

So I had my lap last Monday. Mild/Moderate endo found on both ovaries and ligament. Right ovary was stuck down but was freed easily, left ovary had functional cyst which was drained. Consultant said my fertility wasn't affected but the lap. Plan going forward is to try for baby no 3 now or go on combined pill continuously until baby no 3. I'll be going on the pill as hubby isn't even sure he wants another baby and it's been so miserable and stressful the last 6 months, I'm not sure our marriage would thank us for another baby right now. I'm a bit anxious that waiting to try for no 3 will ultimately make it more difficult to get pregnant but I think it's the right decision for now.

I felt very positive about it all until consultant casually mentioned my uterus is mildly bulky and that might be causing some pain. I'm seeing him in two weeks to quiz him but freaking out this means adenomyosis.

I got my period the day after surgery and was expecting it to be awful but it wasn't too bad but the cyclical back pain and bowel stuff started up right on queue as my period ended (same as last 6 months) so I'm upset about this. Hubby keeps saying it might be my body recovering but I'm not so sure.

Anyway, thanks for your support.

Another survivor here. Also clear symptoms from as soon as I started having periods. Major life interrupting stuff including fainting and lapsing into long periods of unconsciousness. Numerous gp's saw me with me reporting classic obvious symptoms plus an a&e visit pre diagnosis for twisted ovary. Finally diagnosed OUTSIDE uk after 2nd mc resulted in loss of 2 more babies.

Initially relieved to have a diagnosis and treatment (2 laps and medication - not sure of med but remember not used in uk, 6 month course of tablets). Made things MUCH better.

Pregnant with dd not without issues. Birth dangerous. Endo returned as I was weaning her with a vengeance.

Crap gynae put me on depo injection which treated blood loss but not pain so much. Eventually i went back on combined pill which helped a lot, then when I turned 40 NICE guidelines meant gp refused to prescribe combined pill so it came back with a vengeance.

Different gynae prescribed pro-stap. This did help a lot and was worth side effects.

Periods now clockwork regular, 3-5 days, not nearly as heavy and only really painful on first day (but much less so than before). Wish I'd had this years ago.

Yes to I also have endo on bowel, spine and left Fallopian tube. Adhesions left following treatment but was lucky to have very skilled surgeons who have left very little.