Can the endo diet prevent the need for pelvic clearance?! I'm in the need for some good news and a hug!

[cjb-75]

Hi all, I'm 37 with stage 4 endo, I'm very lucky and have a little girl who is 3 and we've been trying to conceive again for the last 2 years.

I had a lap in the summer which found that my endo was basically everywhere sticking everything together. After a 6 month course of prostap and livial, I had a second laparoscopy in February and the surgeon cleared my womb area, (adhesions all over, ovaries stuck to cups, cups stuck to wall, tubes stuck to wall, twisted tube and chocolate cyst in 1 of the ovaries). They were however unable to clear my abdominal cavity or rectum (further deposits discovered at lap number 2 which had not been identified at the first lap in the summer), due to the risk of rupturing the bowel.

I had my follow up with the consultant today,

(RANT 1 - it was not the consultant - he was on holiday, but his registrar!!!, a different person every time!!! Arrrrgghhhhh!!!!!).

Our plan is to try and conceive naturally over 3 months (no pressure then!)

If that fails to try 1-2 cycles of IVF, which we'll have to self fund,

Then dependent on the pain levels and whether we've completed our family (at 1 or hopefully 2) the surgeon is apparently recommending a pelvic clearance

For the last month I have been following the endo diet, I've lost 1/2 stone, had a ton of energy, had normal bowel movements (tmi?) and am hopeful that my pain is going to be less. I had my first ovulation pain since being on prostap a couple of weeks ago, and it was definitely worse than normal, sharp prolonged stabbing pains on and off all day on my left hand side. However my period seems to have made a return today and although I've felt nauseous and achy I haven't had the debilitating cramps that have left me curled up on the floor hyperventilating, or collapsed in the fetal position unable to dress my daughter! (Fingers crossed I'm still ok tomorrow).

I've read that NSAIDS can effect conception so if the pain is bad I'll be managing without mfenamic acid... (even though the registrar and my gp have both said they're fine to use!)

(If my periods returning, and not getting to see my registrar weren't emotional enough I've been helping to register the death and arrange the funeral of my grandfather-in-law today!)

I'd love to hear from you, if you've been on the endo diet, and especially if you were stage 4 and even more if you were recommended to have pelvic clearance. Did it help your pain?. Did you manage to concieve if trying?

Sorry for the long post and thanks for any support

Love

Charlotte

[lillyflower]

Hi sorry I can't help with your question but wanted to send a hug. It's hard to deal with all of this let alone try and sort a funeral. I've been told ill need my tubes removed so IVF will be my only option but I haven't discussed all this yet as waiting for follow up appointment so I'm really not much help. I wish you luck with trying for another baby and glad to hear you have had some relief from the pain. I've heard good things about the diet but haven't tried it yet, its very strict. Anyway big hugs and hope all goes well with the funeral xx

[cjb-75 in reply to lillyflower]

Lillyflower, thanks so much for your kind words, it really helps knowing your not alone! I really hope your follow up goes well.

Best of luck

Charlotte

[Ashbash]

Hi, I'm new to this site and I'm jus waiting for date for first lap anyday now. I was wondering what the endo diet is?

[cjb-75 in reply to Ashbash]

Hi Ashbash,

it's a lifestyle diet that has noticed an improvement in pain symptons of many people by cutting out primarily wheat and cows diary - which are both inflamatory foods, eating red and green veg at each meal which gives good nutrients and fibres to help with oestrogen clearance, reducing intake of alcohol, sugar, caffine, and oestrogenic foods such as soya, and having 2-3 portions of oily fish a week and if possible buying organic, if not peeling unorganic fruit and veg as the pesticides etc can have oestrogenic properties.

Dian Shepperson Mills book, called something like "Endometrios, healing through nutrition", explains a lot but is quite heavy going. She also does consultations to personalise advice.

I'm giving it a go as I've nothing left to lose and everything to gain!

Good luck with your first lap!

Cheers

Charlotte

[reception]

Hi i have stage 4 endo and the said the same to me that everything is stuck together and need. a hysterectomy. i have appointment with doc on Tue so Will get full picture and i can let u know. i have tried the wheat free diet but i find it hard. is there a special endo diet?

[cjb-75 in reply to reception]

Good luck! I'm tempted with my pelvic clearance guidance to see if a second opinion and a different specialist may be able to remove more of the adhesions as it's such a dramatic step!

The endo diet, is just wheat and cows diary free, with lots of fish, veg and cold pressed oils such as extra virgin olive oil.

I'm very lucky in that currently I'm a stay at home mum so I've got the time to cook from scratch and experiment with wheat substitutes. If I was trying this whilst I was still working it'd would have been much much more difficult.

[Bledie]

Hi, I've followed a version of the endo diet (gluten free, decreased sugar intake, little meat (meat free at some points), no dairy) and sadly it did not decrease my pain. I had a lap and then did the diet until my next lap and the endo had not decreased, it stayed the same.

I then became very frustrated and started eating unhealthily.. I am now kind of following it again but trying to be kind to myself and not too strict because it was actually causing me anxiety and I was very hard on myself if I wasn't managing to follow it completely. It's also very expensive.

I'm now almost gluten free and I'm doing that because I've found that when I eat wheat my stomach gets very bloated and I think it presses on the adhesions and all the endo growth, and it causes pain that way. I do have sweet treats once in a while. I drink coconut milk but then I read somewhere that full fat milk is good for fertility so I'm thinking about start drinking milk again.

All women are different, and some women swear by the diet and have noticed reduction in pain, especially period cramps. I wasn't one of them but that doesn't mean it doesn't work.

What I do quite a lot of is take supplement, for a while I took all the supplement that Diane Mills recommends, I think it helped a bit. I am now taking vitamins that are supposed to improve egg quality because I've gone through one IVF and my eggs aren't great quality. I'm not sure it works but sometimes you just want to feel like you're doing something.

Good luck xx

[cjb-75 in reply to Bledie]

Sorry, it didn't work for you, but glad going gluten free has stopped the bloating and the supplements have helped a bit. I totally know like you want to feel like you're doing something. I'm going to try acupuncture again I think if nothing more than to feel relaxed. The diet is expensive, but I'm sort of thinking that if it works it's a hell of a lot cheaper than paying for IVF.(we don't qualify for treatment on the NHS)

Best of luck with IVF, and I hope we both succeed!

[cjb-75]

Thanks all for your responses, it does mean so much that people who understand listen and take the time to share their experiences.

I've had my first full day of periods today and I haven't had the debilitating cramps! Hurrah, but I have had an intense full on ache, felt nauseous, and needed the loo the whole time! - So there is some improvement and I'm hoping there'll be more next month... Fingers crossed.

[Bledie]

Thanks and good luck to you to, have you spoken to your gyno about getting Femara? I think it increases likelihood of conceiving because more than one egg is released per cycle, it is also supposed to be better than Clomid, because Clomid negatively affects endo.

I also took green tea supplement for a while, it is meant to improve fertility and decrease endo. My period pain and my endo pain in general wasn't as bad as normally and the flow was lighter no clots (tmi sorry!), I was also more energetic which was great. I stopped taking it though because it can inhibit folic acid intake and I always forgot to take extra folic acid and my nails became brittle.

Good luck with everything, hope everything works out for you, and that you'll conceive naturally. If you end up doing IVF then you have better chance than women who've never conceived before.

Take care xx

[endoprof]

Just wanted to throw in that I've been using femara for six months with no luck. Basically femara causes ovulation; if you're already ovulating, the doctor told me it won't be helpful. I asked him about clomid v. femara since I had a friend who got pregnant with clomid and he said either are about as good as the other as long as they "work." Work here means they make you ovulate and you can of course check that with an ovulation predictor kit or by going to the doctor for ultrasounds. But unfortunately ovulating doesn't equal pregnancy for so many of us and I don't think it increases egg release, but my doc could be wrong. If you're not ovulating, I'd consider it. I'm from the U.S. and femara is a lot cheaper here than clomid but not sure how insurance works in a nation with universal coverage (hopefully better than here).

[loobylou74]

hi not really an answer to your question but i have been following the endo diet for 2 months and have noticed a definite reduction in my pain ,i would say from a 9 to a 6 and two months is not long really for a change in diet so i'm absolutely going to persevere.I'm at home in the day too which i agree makes things so much easier .You really do need to be organised don't you.oh and i have failed to give up wine as its the only pleasure i have left.lol. Hope you get your much longed for baby and the endo diet will at the very least leave you fitter and healthier which is never a bad thing when trying to conceive. good luck.x

[cjb-75]

Thanks Bledi and Endoprof, I asked about IUI, which I think uses clomid and the consultant said it wouldn't be any use for me as I'm ovulating ok.

loobylou74, that's great news your pain has come down so much. I'm still drinking wine too, although trying to stick to my allowance!

I think my pain has definately moved on, my husband said basically if I hadn't timed my co-codomol tablet first thing so I could take mefenamic acid with breakfast, I'd be throwing up and stuck in bed all day, whereas for the last 2 days I've been on paracetomol and heat pads only!!! A definate improvement. Fingers crossed it keeps getting better, if so the endo diet will have been so worth it and I can keep all my organs! Heres hoping...

[Amb43]

I am so sorry that you are going through all this, and I truly wish and hope for your that your plan to conceive naturally will come to fruition soon. I struggled to get pregnant and suffered miscarriages, but that was over 20 years ago. Seems I may have had Endo for a lot longer than I or anyone realised. Also so dreadful for you to be coping with a death, funeral arrangements and finally the funeral, while all the time going through the trauma that is Endo. xx hugs xx

What I really wanted to ask, if you don't mind, was more about the fact that during your first Lap, some of the Endo wasn't discovered and it wasn't until your second one that it was found. Where exactly was it found (Pouch of Douglas?) and do you know why it wasn't initially? I appreciate that it may well be to do with the fact that, for want of better words, you really are a tangled mess in there (sorry x), but I have suspicions that something was missed on my recent Lap. My main pain is daily, nagging, dragging, heavy, dull ache in my lower back. I was initially told Gynae related pains do not cause lower back pain (a whole other story), and it was only when I complained in a letter to the head Gynae, because I knew from research that lower back pain IS or rather can be Endo related, that I had a Lap arranged. I was found to have Endo on both ovaries but "nothing to explain my back pain". So, as suggested, I had my back checked out, with Lumbar Spine X-ray and an hour appointment with a Specialist Nurse at a Back Pain Management Clinic, where she told me that my pain WAS Gynae related, and that there was nothing physically/structurally wrong with my back and she would write to Gynae telling them so. Soooo, I am wondering if it is possible that something was missed during my first Lap, I had put the back up of the Surgeon when we spoke before my op when she told me it wouldn't be likely I have Endo (well she got a bloody surprise when she went inside!!)

Do you think I could ask for a second Lap. What was the time span between your first and second? Was there any explanation for yours not being seen first time round?

I do hope you are having a better day today and have everything crossed for you that you are blessed with another child soon.

xxx

[cjb-75]

Hi Amb43,

Thanks for the hugs, and of course I don't mind you asking this is what the forum's all for!

My first lap was a standard diagnostic with the standard gynae team, I don't even think it was my consultant doing the surgery, and we are all lined up like a conveyor belt, with a limited time booked in surgery, I think they opened me up, went OMG, took some photos and closed me up again!

The first letter I had which wasn't addressed to me but to my doctor and I had to request a copy, said.

Normal uterus, both tubes normal length and free fimbiral ends with dye spilling as it should. Extrinsically the tubes were inflamed and adherent to the adjacent ovaries and posterior uterus, The ovaries were normal but adherent to the posterior uterus and the ovarian fossae. Further widespread adhesion in the Pouch of Douglas with generalised inflammation in the pelvic structures. Recommended GnHR antagonist (prostap) until a 2nd operative laparoscopy with a visiting specialist from a different hospital.

My first Op was in October and my Second in February so 5 months apart.

The 2nd letter again to my GP, which I again had to request a copy of said.

lap confirmed widespread scarring and adhesion formation, both ovaries were adherent to the underlying ovarian fossae and to the posterior uterus with adhesions to the adjacent fallopian tubes, more so on the left. Further evidence of scarring and adhesion were noted deep in the Pouch of Douglas between the anterior rectum and posterior cervix to the extent that the utero-sacral ligaments could not be visualised. Further evidence of scarring and adhesion formation were noted in the utero-vesical fold, particularly affecting the insertion of the left round ligament and adjacent fallopian tube, which was kinked by adhesions. The right ovary contained a small endometrioma.

Sorry for so much information!!! So the new information was the rectum adhesions and the extent in the abdominal cavity.

I think the reason they missed it at the first op, was that it was a standard, short time slot with the standard gynae team. I think they found it at the second as they had a specialist in from another hospital. I don't think they got rid of it in the Pouch of Douglas / Anterior Rectum/ Postierior Cervex due to time constraints, lack of a bowel prep, and risk of damaging my bowel etc.

My plan of action is going to be to stick with the endo diet as much as possible, try acupuncture and ttc whilst trying to stay relaxed. I'm very very hopeful the diet will take my pain to manageable levels (this month I just had heat pads and paracetamol!) If I can do that then I won't need to lose all of my insides. If the pain continues to be unmanageable then I think I will ask for a referral to another endo specialist to see if they think they can remove the adhesions without removing my organs.

My pain is very different to yours as well, I get sharp stabby pains when ovulating, then 1-3 days before my period get a deep ache in my tummy and lower back, then when my period starts debilitating killer cramps, which leaves me bed bound for 1-2 days.

If you're not happy then I'd definitely ask for a second lap, but with a different team, I wouldn't have confidence that the same people would think to look in different areas or find anything different. Your GP should be able to refer to a different hospital. Your current gynae team should also be able to tell you the level the endo is, ie. 1,2,3,4 where it is and have taken photos to pass on if needed.

Best of luck and I really hope you find a solution to your pain.

[Monkey47]

Hello,

I too have been advised to alter my eating habits and have been following a pretty much carb and dairy free and no refined sugar way of eating for the last 5weeks. I also drink no alcohol and fast every other day (500 calories on fast days) & drink tons of parsley in hot water! My husband has supported me through this and he has lost 6kg! I havent lost weight but the heavy feeling after I eat is less than before and I do open my bowels much more frequently now (tmi sorry!) even when I'm on codeine and tramadol. We make our own fruit juices and smoothies using our ninja so its easy to clean up and quick. My husband has even perfected it so he makes real fruit "ice cream" when we need a pudding! I also find that if I have my first meal of the day around lunchtime I cope better and give my insides time to wake up and it really affects the ease of my bowel movements. We eat lots of unsalted nuts and dried fruits and when I'm able to we make larabars made with ground cashews, dates, seeds etc which are filling and natural.

Even though I havent lost weight i have trimmed down and it makes my bulgy bloated tummy a lot more noticeable now which is good and bad as it looks like a pregnant belly!

My lap s next Thursday so hoping we get some answers then.