Endometriosis

[hunkermunker]

Does anyone else have this (I'm assuming quite a big yes, since 10% of women do!)?

I'm on my second period since DS was born eight months ago (50 days since the last one) and it's getting sore again

I have stage 4 endometriosis and have had one diagnostic laparoscopy, two treatment laseroscopies, various drug therapy (none of which worked) and obviously one pregnancy.

I was just wondering whether anyone's endometriosis had vanished since having a baby, like we're often told by the medical profession? It looks like mine won't, but I'm trying to keep it at bay by breastfeeding for as long as possible!

bump bump bump.....

Thanks Donbean - anyone? It's been worse today

Sorry, no experience of my own to add just that of a friend. She had endometriosis and was told she was unlikely to conceive but had two lovely boys. Then several years later had twin girls - a total accident.
Hope someone with direct experience comes along soon!

Hello, Have you read "explaining endometriosis' by Lorrain Henderson and Ros Wood?

never did find out if it was what I had - had son by emergency c-section (pre-eclampsia and breech) and after the birth, every time I had sex up to 14 days before my period, I would get what I can only describe as labour pains - lower back pains, feeling sick, intense pain - this would last a couple of days and no pain killer (not even prescribed ones) would help. Was suggested I had a laproscopy, but had PND after the birth and more surgery was the last thing I wanted.

Sorry, can't offer any advice to you though. At least your message will be bumped up now though.

Hunkermunker-

I was diagnosed with endometriosis years ago. As a result, I also developed anemia, and had quite a hard time during my periods. Was told my chances of TTC were probably quite small. I'd been on the strongest birth control out there for 5+ years, since it was the only thing that helped even the littlest bit, but somehow got pregnant with DS (now 15 mo.) quite easily, and only had 3 mo before I got my period again(was still bfing even), but they have been much, much better since. I had a pretty bad one last time, but nothing like they used to be, and hopefully will stay that way.

There are loads of great herbs/supplements that can really help - get in touch with www.gni-international.org who can refer you to a naturopathic iridologist in your area. I have had some great results at controlling this with my patients.

Are you in London or Surrey area ?
A friend of mine has been amazingly successful at treating it with womb massage. If you want more info CAT me I could give you her details and you could ring her up and chat with her or her clients....

I have endometriosis too and have had numerous laparoscopies with laser which I have had about every three to four years. Most recently I was treated by Mr Christopher Sutton who is in Guilford. (My GP referred me although I was living in Bedfordshire at the time, as he is an expert in endometriosis)He treated me with lap, laser and LUNA (laparoscopic uterine nerve ablation)back in 1998 and I had been well since then.
I have now got two children, and the youngest is 9 months and although I didn't brestfeed DS at all,it is only now that I am starting to get my left ovarian pain back.
I'm a midwife and was taught that having children stopped endometriosis pain, but every woman I ever looked after that had it, and had more than one child told me otherwise!
Maybe you could try and get an appointment with him, he was at the Royal Surrey and Mt Alvernia(private)hospitals.
I'll keep an eye on the thread to see if there are any other suggestions as surgery is so invasive, but to have been Ok for 6 years rather thaan 3-4 was great!
Good Luck

Hi i found out i had endo over 10 yrs ago when i was 18 had laser op and they tried me on a really strong pill if that didnt work they were going to put me on hormone tablets. I said stuff all these drugs you are putting into me when i want to get pg these drugs wont help me either. so i went drug free and you wouldnt guess it but i was in less pain periods were still heavy and some months i was bed ridden with period pains but it wasnt every month like b4 since i was 13 but i was determand not to pump my body with anything that would make my chances of not getting pg when i was ready. was in a long term relationship with my dh now and we never used contraception. nearly 3 yrs ago we bought our first home and within 2 months i was pg after being told that i couldnt have children without help (ivf etc).
I was told that having a baby doesnt get rid of endo but while you are pg you dont suffer from it as you are not ovulating or having periods. I admit that i have only been bed ridden once since ds was born 2 yrs ago and that was proberly one os my first periods after the birth. Been ttc no. 2 for nearly 12 months now and going for another op on the 15th of this month.
Sorry to ramble

Sorry it looks like i killed this thread.

Hi everyone

Tania, you didn't kill the thread - I've not been well enough to reply

I was told I was unlikely to conceive (have PCOS too - lucky me!) so I'm really glad I have DS.

Petall - Dr Sutton has retired, but I have been operated on twice by a fantastic surgeon who trained under him. He told me I 'grew' endometriosis very well and the expected pre-op 5 years he thought he'd give me after my first operation was shrunk to two after he'd seen inside me.

Pupuce - womb massage? Sounds...odd...but worth a try! I'm in London, so will CAT you later.

I wish breastfeeding had kept my periods away longer, but I suppose a pregnancy plus eight months is pretty good going. DS wouldn't like it if I stopped though and keeping the endometriosis away isn't my main reason for doing it, so I'll keep on!

Thanks again ladies - I just wish there was a cure for this! If men got it...well...!

I have for so long now, had so many conflicting information snippets about endometriosis, the mirena coil and fertility. That I am very grateful to have now stumbled onto this web site.

I have had the mirena coil for six years now, just turned 28. I was diagnosed with endometriosis when I was just 21, after a long hard struggle getting the doctors to fully examine me. As I was 'brushed off' and supplied with muscle relaxants (which caused more pain as they were fighting with my bodys' own responses) as I fitted the typical age bracket of an IBS sufferer. Apparently young women do not eat enough fibre as typically have bad diets??!! (Weetabix and brown bread every morning for me) Then as it progressed and got worse it was suggested I had appendicitus, then rumbling appendix and eventually late on a Saturday night five years from when the pain had started (which was age 16-17).I was finally taken to theatre for a laparoscopy which diagnosed endometroisis.

My experience with the marena has been good, I have had no endo pain since it was fitted, weight has been normal fluctuations. My only complaint is bouts of acne. Hormonal type lumps on the jawline. These were regular but occassional now. Although originally I did believe this was down to the tablets and zoladex injections I had had as part of the endo treatment to essentially remove, then replace hormones within the body. But since reading others mirena messages, it has got me wondering ....

After having the depo for five years previous to the marena coil, I would add it has worked better for me. As the depo caused huge weight gain and continous untimely spotting which I believe did not help the endo, whereas marena abolished all periods very quickly. (this was something I had to be assured was normal)

My worry now is since I have now had the marena removed two weeks ago trying for a baby with long term partner No sign of period yet... does anyone know how long the body takes to get back to normal? Also I am dreading it in case endo returns along with heavy painful periods . But most of all will I fall pregnant??? Cos I have read such conflicting stories whether marena good with endo, some good, some bad reports...Some concerns about having the mirena before having a family?? Besides the scare that endo itself affects fertility.

Sorry to ramble just grateful to be in touch with people that may have had first hand experience instead of doctors who have quite honestly confused me with all their opinions..

Thank You

Help! Feeling very scared. I'm having a laparoscopy tomorrow. Been putting off thinking about it but it's suddenly hit. Any reassurance gratefully received! Any hints/tips?

This is a nasty condition..my mum suffered from it for years, and for a while many doctors didn't even acknowledge it as a problem (a bit like ibs)
Good luck at the hospital is all i can say...

One thing, in case they forget to warn you.

After the op your neck, shoulders and back will probably ache a lot, due to the hunched up position you are in during surgery and the gas they pump into your abdomen.

No one warned me and when it got quite painful during the night at home (I had day surgery, no over night stay) I did panic a bit. I only needed a mild painkiller, but some reassurance beforehand would have been useful.

Good luck for tomorrow, you'll be fine.

Hi everyone I have had Endo for 12 years I have had five laproscopies. I have also had two major Ops to remove adhesions and growths. One was a Laprotomy (sp?_ and the other was keyhole surgery which involved a gynae and bowel surgeon. I have had a really tough time with it and my only symptom was extreme pain. I also have a Fibroid and PCOS.

I was told the chances of me concieving without IVF was zero. Well i did get pregnant last year and unfortunately had a miscarriage which was not proved to be related to previous gynae problems. So we had numerous appointments for IVF and then as we were about to start the cycle I found I was PG again naturally!

After a very rocky start I am now 15.4 wks pregnant and they are keeping a close eye on me but everything is going well! I have not experienced any real pain since being pregnant just the odd bellyache and twinges which is a walk in the park compared to what I am used to so I am hoping this level of pain will continue. I have already been told I will cave to have a caesaeriandue to previouse surgeries etc.

We had almost given up hope but am pleased we carried on trying.

BTW the laparoscopy is a minor op and you should be up and about in no time!

WOW ... that makes me feel quite insignificant for worrying about my laparoscopy now. Fantastic news that you are pregnant now though.

So I guess I shouldn't be worrying then?

I believe you can go through life worrying about everything and bypass all the fun things. I have always tried to live life to the fullest even though in agony sometimes. I nearly passed out whils walking round NEw York with pain but was determined not the let the bloody thing ruin my holiday .

I know some apprehension before an op is normal but you have to look past that and see how more knowledgable the doctors will be afterwards and how much more help they will be able to give you.

Keep your chinup!

NNLM, I have had three laparoscopies (as detailed in the first post on this thread).

FOr me, it was only surgery that worked - the diagnostic lap did nothing to treat me, and a year on, the pain was crippling (literally couldn't walk and spent most of the day in agony ). My joints flared up as well, which didn't help - am sure that endometriosis is more than a gynae condition - think there's an autoimmune factor to it too.

Not sure if you're worried about fertility, or how bad your endo is, but I conceived DS on my first cycle of Clomid and am now pg again naturally - fell the first month of trying, a year almost to the day after I had DS. I also have polycystic ovarian syndrome, so to have got pg this easily has been very surprising!

My first lap was day surgery, but my blood pressure dropped so violently that they were considering whether to keep me in or not - on a trolley in A&E... Needless to say, I discharged myself!

The second time, I had an overnight stay as I went private (too painful to wait several months for an NHS operation). The third time, I had to go in the night before to, er, evacuate everything so that my bowel was clear as I had enormous amounts of adhesions (after the second operation the surgeon said he was extremely surprised by how much disease was present - said my left ovary was invisible because of the adhesions binding everything together) - basically I seem to grow endo very well

I found that my shoulders hurt after the operation the first time, but not the second and third. It's a sharp ache which makes it hard to breathe - it's caused, as St George says, by the gas they use to inflate your abdomen.

You shouldn't have big scars, but depending how much they do inside, you may be pretty sore for a while. Take the pain relief you're offered. And apparently peppermint's meant to soothe the shoulder pain - if you get it and there's a great chance you won't.

Wow, an epic! Good luck with the operation. I am sure that you will feel better after you're healed - I found it truly life-changing.

Hi again hunkermunker!

I had really bad endometriosis, 1 diagnostic laparoscopy and 2 treatment laparoscopies plus various drugs. Had ds now 17 months (conceived naturally - big suprise to everyone), lots of clearing up during my cs and have just got pg again. Had no symptoms whatsoever after giving birth, apparently they gave me a really good clear out! Am now pg again so will have had 3 years with no sign of it at all, I just hope this is the shape of things to come!

Hi Anchovies! Wonder what else we have in common?! that endo is one thing though!

When are you due?

Due in late feb early march so early days yet. We're doing quite well on things in common today! Hopefully the endo is the worst of them!