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Endometriosis/adenom yosis - any advice please?

(23 Posts)
MakeHayNotStraw Tue 19-Feb-13 22:18:37

I've just been given a probable endo dx - possibly adenomyosis, and referred for MRI to try to get more info. I'm not a suitable candidate for laparoscopy due to too many abdominal surgeries that show keloid scarring, and adhesions inside that the gynae could feel. The only options she offered were hormonal treatments that either induce temporary menopause or are progesterone - as I am bf and TTC these are not really options for me (and I would be reluctant even if this were not the case, tbh).

I'm currently looking into controlling it through diet. I think I am lucky in that it seems relatively mild (although may be getting worse), so I'm not too desperate and have time to investigate. Does anyone have any advice or experiences that they wouldn't mind sharing? I am worried about being able to conceive, especially if it is adenomyosis rather than endometriosis, and obviously would rather not have the pain and discomfort....

Thanks in advance!

MakeHayNotStraw Wed 20-Feb-13 08:38:03

No-one?! It suddenly seems very rare - I have had no replies on my other forum either!!! (Don't know where the random space came from in the title...)

whattodoo Wed 20-Feb-13 08:50:33

I had endo (I'm now post menopausal).

The only thing that helped me was mefanamic acid which I took from a few days before my period was due.

Don't know if that will be suitable while you're breastfeeding though.

Have just seen this.

In my long and painful (if you pardon the expression) experience with endo (which I have suffered from since I was 14, I realise that now) I found that dietary changes made no difference whatsoever with regards to endometriosis in terms of its overall severity. However, everyone is different and I did not have endometriosis in my intestines.

Any sort of abdominal surgery can lead to adhesions forming post op; these are like sticky strands that tether organs together. Drug treatment on its own won't assist with adhesions, these can only be surgically removed.

I would consider seeking a second opinion. Ideally you need to see a consultant gynae who also has an interest in endometriosis as well as up to date knowledge, such people do exist out there but they can be hard to find. A general gynae may not necessarily have enough hands on experience, knowledge or expertise to deal with more complex endometriosis cases.

Would suggest that you have a look at www.endo.org.uk as its a helpful UK based website.

MakeHayNotStraw Wed 20-Feb-13 10:05:10

Thank you - that's really useful information. I have spoken to my dr, and she has said wait for the MRI scan and results and also suggested seeking a second opinion. I have had quite a lot of stomach surgery (childhood, 2 cs and a lap tube removal) and there are adhesions present which was why the consultant was worried, I guess. As I said I am lucky that its fairly mild, mostly just annoying and uncomfortable a lot of the time and only painful around ovulation/period. I'll look up mefanamic acid on the bf help guide, too.

Much appreciated!

Helpmeboop Wed 20-Feb-13 11:25:34

Hi guys I have an area around my 5 year old c-section scar which is suddenly extremely sore and slightly thick. Difficult to tell if cyclic as on continuous pill. Gp reluctantly sending for ultrasound. Please could you tell me whether endomitriosis is sore to the touch or is it more like period pain? Confused and in a pickle and would really appreciate any advice!

Gintonic Wed 20-Feb-13 12:30:39

OP I don't have a lot of advice to give but just to say that the severity of your endo is not necessarily an indication of how difficult it will be to conceive. You can have very mild endo and trouble conceiving, or more severe endo and no problems conceiving.

Mamf74 Wed 20-Feb-13 12:50:42

Hello flower,

First off, I am on my phone so apologies if this reply goes tits up!

I have tried a couple of "endo" diets, most are quite full on in terms of exclusion but can help. The most famous (if that's the right term) is a book called Endometriosis - a Key to Healing via Nutrition by a lady called Foam Shepperson Mills. It does read very much like a medical textbook but is packed with info about food groups & endo. Taking her suggestions to the letter us hard, and obviously doing it all at once is tricky as you can't tell what is helping but still worth a read. Most libraries will carry it, and the author also runs the SHE Trust which has a great website. Diet changes have helped me as I have bowel involvement, but tbh most of it with me is common sense rather than a 'plan'.

Hormonal treatments are a sod but I do credit a 9 month course of Decapeptyl for my 3 year old DD, after being advised natural conception was impossible. Most of them are finite and don't bugger your cycles around too much once you stop them (took me about 6/7 months for.periods to resume after 9 months of jabs). Am currently on Depo Provera shots and would swap them for the Zoladex / Decapeptyl shots in an instant. I would suggest HRT with them, if you can take it, definitely helps with HellBeast tendencies!

Finally, it is true that endo is a law unto itself re conception. As I've said, I was advised natural pregnancy would be.impossible or a certain ectopic but the gobby, funny, pita 3 year old running about proves my Drs wrong! Interestingly, I've since been told that as my DD was totally naturally conceived further children may not be impossible as my body "found a way"; whether that's true or not I don't know, but there seems to be teeny shards of light in every situation.

I do have endo, though and not adeno so some of this may not be helpful but you're not on your own smile. Hope you get some answers soon.

Mamf74 Wed 20-Feb-13 12:52:03

That should be Dian Shepperson Mills <sigh>.

WakeyCakey Wed 20-Feb-13 19:00:11

9 months of decepeptyl here too.
The needles are big but its worth it for the pain. I unfortunately haven't been able to conceive since them (yet).
I have had 3 laps, mefanamic acid, oramorph for the pain and countless A&E visits.
At the moment I am off all contraceptives as TTC but after my decepeptyl I went on the pill back to back for 2 years to be sure i didn't ovulate.

I would definitely get a second opinion, just in terms of the laps more than anything

MakeHayNotStraw Wed 20-Feb-13 19:34:11

Thank you all - and I'm so sorry that any of us have to suffer this, it sounds like you guys have it a lot worse than I do. Can I send a few hugs (I know it's not te done thing round here....). Mamf I might call my next child (god willing) Foam....! I don't think conceiving will be too much of an issue (I hope), but I am worried about what happens then - I've already had one nasty ectopic since this started.

helpmeboop mine is more like period pain, usually, except at ovulation and before/during period when it is outright painful - at those times if I'm touched (or, as my DCs like to do) kicked it is very sore. Otherwise not usually sore to touch. I think everyone is very different though. I hope you get to the bottom of it.

cocolepew Wed 20-Feb-13 19:54:16

Hi I had adenomyosis and needed a,hysterectomy, but I was 43 and had already had my children.
I had old endo scarring but never had it diagnosed before this.

Sorry not much help!

YummyDollie Thu 21-Feb-13 04:20:57

I have endo but am currently 32 weeks pregnant so not suffering from pain from it my consultant had told me as a general rule as long as your not having a period you shouldn't suffer from pain or discomfort caused by endometriosis. So whilst pregnant/breastfeeding it shouldn't be causing you pain? I had norethisterone (sp?) tablets to control my endo an they were a GODSEND! I had previously tried several hormone treatments but nothing worked as well as those, my consultant insisted the endo diet was rubbish too btw, sorry not much help here I feel your pain though endometriosis is a horrible thing!

MakeHayNotStraw Thu 21-Feb-13 12:52:02

Congratulations on your pg, Dollie! That's brilliant. Ds is nearly 2, so although I am bf my periods have also returned. I was lucky enough to get 15 clear months post birth both times though! coco the hysterectomy must have been a huge relief. Thank you both for your replies.

Jo2508 Fri 22-Feb-13 21:35:25

I have endometriosis, it is very painful during the first 2-3 days of my period but I do find that exercise really helps, even though it is hard to feel like exercising in the first place. Reflexology has also helped at times as has wine
It took 2.5 years to conceive my dd and my periods returned after only 3 months, while I was still bf.
Hope you find ways to manage yours, and that it's not too painful.

wineyhouse12 Sat 23-Feb-13 20:36:09

hello. Do any of you suffer lower back pain and hip pain with your endometriosis? my back pain started when the womb pains started but my doctor wont investigate and i feel like screaming. x

Jestrin Sat 23-Feb-13 22:18:02

I get pain in my left side, usually around ovulation time.

Jestrin Sat 23-Feb-13 22:18:36

I can also get achey legs.

MakeHayNotStraw Sun 24-Feb-13 07:51:19

Hi wineyhouse I just posted on your thread, but yes, I get back pain and during ovulation sometimes down my legs. Rubbish.....

wineyhouse12 Mon 25-Feb-13 11:52:00

Thank you. just a relieve, ive felt like im going crazy sometimes. smile. i went to see my doctor today and i am being referred to an endo specialist so fingers crossed i get sorted. x

MakeHayNotStraw Tue 26-Feb-13 17:09:08

Good, I'm glad you are getting a referral. That is progress! I have an MRI in a few weeks to see if that shows any more (I can't have lap surgery). I hope you get your appointment soon.

Helpmeboop Thu 21-Mar-13 14:06:08

Thanks MakeHayNotStraw - no luck yet, still sore but here's hoping!

pinkpanther79 Fri 26-Apr-13 17:46:05

If you're not TTC I am finding the Microgynon pill amazing. GP has now said I can take 3 packets with no break so just 4 periods a year. Plus they've been loads lighter and less painful.
When I was TTC I went for Ibuprofen and paracetamol when Mefanamic Acid ran out. Our local hospital has a specialist Endo Nurse and she was fab on pain relief. May be worth checking if there's someone in your area?

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