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Anyone want to join me on an Endometriosis and/or other menstrual disorders support thread?

(47 Posts)
DrRanj Wed 09-Jan-13 09:33:39

Got a consultant's apt later this month, still getting pain despite lap for endo last year, and I'm a bit anxious about it!

I know there are a few of us out there so would be nice if there was a thread for us to vent on! There are other forums out there I know, but I like mumsnet so it would be nice if we were all in one place on here

I'm wondering whether it's better to start it here or in infertility, as the two can go hand to hand, though not always I suppose...

DrRanj Wed 09-Jan-13 09:45:42

I'll start with some general moaning - I am supposed to be going for a run and then catching up with some uni work, instead I'm huddled up on the sofa in pain with a hot water bottle waiting for the painkillers to kick in so I feel normal enough to get on with my day.sad Best laid plans...

50shadesofknackered Wed 09-Jan-13 10:33:32

I have Endometrial Hyperplasia so I never stop bleeding or moaning as well as fibroids etc. I'm having a Hystetectomy next month and although I'm only 36. I am v nervous terrified I hope u r feeling a bit better.

DrRanj Wed 09-Jan-13 10:50:46

Oh you poor thing. sad I'm quite lucky that my bleeding has never been excessively heavy, just painful! Though endo means I tend to bleed into my pelvic cavity instead of out the normal way. sad

My aunt had a hysterectomy recently and she had to have it abdominal ku instead of vaginally/laparoscopically as she had 5 dcs by cs! So quite a major op but she recovered really quickly with no problems at all, and she said it was the best thing she's ever done as she bled very heavily as well. So hopefully you will be fine! smile

DrRanj Wed 09-Jan-13 10:52:56

Oh and I am feeling better ta, just got back from a gentle jog. Sometimes wallowing just makes me feel worse, so decided to get my arse in gear! smile

50shadesofknackered Wed 09-Jan-13 11:12:00

Pleased you are feeling better, I know what u mean, sometimes getting moving is the hardest part. I'm pleased your aunt is happy after having the op. I think after having it I'll be relieved, my life is being ruined by it all at the mo so it should make a massive difference. Hopefully smile

DrRanj Wed 09-Jan-13 12:39:59

I am a bit worried that my consultant will suggest another op. I went to a new hospital as my lap last year didn't make any difference to my pain. I saw the specialist nurse and she suspects they either didn't remove the endo adequately or that I have bowel involvement that they either missed completely or just didn't look for. She wants the consultant to properly examine me first, but she suspects he will suggest another op and even gave me all the leaflets about it. sad

I had such an awful time after my last op, I got an infection so I was really sick for a couple of weeks and I hadn't arranged enough time off uni and had exams etc so it was all really stressful, dp was also working overtime too. Don't let that scare you though, reckon I would have been way better if I hadn't got the infection, which is quite rare. After my cs I recovered much quicker and that was a far more major op!

Only advice I will give is book at least 2 weeks off work, make sure you have lots of support and childcare in place of you have dcs, especially arrange someone else to do the driving (it was too sore for me to wear a seatbelt), fill the freezer up with easy pre cooked meals, and do all your housework before you go in! If you are up and about in a couple of days, which more than likely you will be, tgat's all well and good and you can go back to work early. But if you do need just a little bit longer, then the pressure is off a bit!

If I have to have another op then I'm going to make sure it is over the summer holidays and dd is at the childminder!grin

DrRanj Thu 10-Jan-13 20:16:45

Bump? See lots of individual threads on stuff like this so would be nice if there was one thread where we would all get

WakeyCakey Thu 10-Jan-13 21:21:02

Endo here 3 laps later, two 9 month courses of injections and 3 years of being on microgynon back to back with no break. Have just come off my pill with the hope of TTC and the pain is unbearable.
Been in a moany mood all day.
So glad I'm not alone smile

DrRanj Thu 10-Jan-13 22:19:55

Yikes! You poor thing. sad

What grade is your endo?

If it helps, I fell pg with dd completely accidentally after only 3 months with dp before I was diagnosed, although my endo was only minimal (though frickin painful) when I had my lap about a year after having her, and there wasn't much in the way of adhesions/scarring.

Bit sore again today. It sucks as sometimes I'll go a while and be relatively pain free, and I start to get hopeful that maybe the mirena is finally keeping it at bay, and then I'll suddenly go through a bad phase again. I guess I am still having a "cycle" as such, even though I haven't had a proper bleed since I had my mirena fitted after my lap...

WakeyCakey Fri 11-Jan-13 21:42:38

That is my problem they say mild-moderate but to me it is crazy severe pain.
I remember passing out in a pub toilet (luckily unlocked) as the pain suddenly came on. An ambulance was called and the paramedic told me it was my brain responding to the sudden pain in the safest way possible.

I am weighing up the pros and cons of coming off the pill. I am desperately broody and ready for a baby, also know that pregnancy can help alleviate symptoms, however if I don't conceive quick (fingers crossed ladies) then I don't know how I will fair with the pain.

DrRanj Fri 11-Jan-13 22:39:53

I am weird in that I was diagnosed after dd. have probably always had it of course, I too nearly had an ambulance called by my ex after I went green, rivers of sweat were running off me, I vomited and nearly passed out. He couldn't actually believe that was all just from a period!

After dd I had some blissfully pain free periods, and actually my actual period pain never got as bad as it used to be, but then I started getting mid cycle pain and pain in my leg, hip, bum, fanjo etc, whereas I used to just get it a few days before and during my period in my abdomen! So i guess it went away and then came back again in a different place!

If I were you I would just go for it, get pg, then bf as long as you can! Even though my periods came back while I was bfing (did it for a year) they were not painful at all until I stopped.

I am trying to work out when to try for my next, just want to get my degree finished first and be working so I can get some maternity pay! smile

DrRanj Sat 12-Jan-13 07:40:25

And if it helps I conceived dd very easily, so fingers crossed you won't have to get acquainted with AF too frequently!

I come from a very fertile family, in which most of the women I suspect have endo judging by their symptoms, so hopefully endo doesn't always spell infertility. My gma had 6 children and breastfed all of them because she couldn't bear having periods and she always says pg was her happiest time, despite suffering crippling morning sickness, she was never diagnosed but I strongly suspect she had endo too. She was fascinated when I was telling her about my op and what endo was, it was almost as though you could see a lightbulb going on in her head!

God how women must have suffered before we had the medications and surgical options we had! Did you know maralyn Monroe had endo? No wonder she ended up addicted to painkillers and ended up killing herself poor woman. sad

WakeyCakey Sun 13-Jan-13 19:51:33

I've waited until my job is secure enough, I am entitled to everything maternity wise. I bought a house in 2012 so I'm hoping 2013 is the year I give DSD a half sibling.

However it completely depends on how the pain goes, it is always at the most inconvenient times.

I don't know if I can effectively plan things as have no idea about my fertility or my cycle or anything now that I've been on the pill for so long with no break, waiting to see of I ovulate for the first time in so long.

I absolutely hate endo!! It took away my freedom by hospital stays and morphine stops for the pain! Dp has been a saint with it all but truthfully if it wasn't for my want for a baby he would not ever push me for one, he wouldn't mind if we didn't just to stop the pain!

Fizzylemonade Sun 13-Jan-13 21:43:51

Hello DrRanj and WakeyCakey.

I was diagnosed with endo in 2000.

Done the rounds of meds from prescription pain killers with Dydrogesterone (Duphaston), then Buserelin (Suprecur) to put my body into a fake menopause for 6 months along with HRT (I was 27) and finally laser lap and dye.

My lovely consultant then told me I was very scarred inside and they didn't even know if one of my ovaries was working due to the scarring but that at least my tubes were clear.

I was told unless I wanted to end up down the IVF route to get pregnant. It only took 2 weeks!

WakeyCakey my cycle was all over the place from 26 days to 40. So to conceive ds2 I bought ovulation predictors off the internet, just did a urine sample and dipped a strip, when the line appeared it meant I would ovulate within 24 hours. It meant we had an idea of when I ovulated.

Turned out that I always came on my period precisely 14 days after I ovulated by like I said my cycle wasn't the typical 28 days.

I am luckily relatively pain free, I use a TENs machine on my stomach (from Lloyds pharmacy, it's their own product) and start taking ibuprofen the second I know I am coming on, so it kicks in before pain starts. I take just paracetamol and ibuprofen but I set an alarm so that I am not without pain relief. I also use a menstrual cup rather than a tampon which weirdly seems t olessen my pain.

But what has made my life so much easier is I now don't work, my lovely DH works his backside off to provide for us. It means on really rough days I can do a school run with gritted teeth and come home and get into a hot bath. My two boys are now almost 10 and almost 7. I never thought I would have any children (have seen my medical records and saw what the consultant actually wrote to the GP where he described the chances of me having children as slim)

DrRanj Sun 13-Jan-13 21:59:10

Hi fizzy!

How lovely that you've managed to have a family!

Dd was an (albeit happy) accident. Despite always having rubbish periods it had never occured to me there might be any threat to my fertility. My diagnosis has made me feel really blessed to have dd.obviously it would appear my fertility is intact, but tbh over the years I have not been overly careful with contraception as I have always been in a long term relationship, so who knows when I actually want to try it might not be as easy as I'd hope! I've seen women on the endo support groups boards who have already had kids but then find it difficult to conceive another. sad

Part of me thinks I should just hurry up and try just in case, or even just to have the break from the pain that pregnancy brings! grin

Had a bad day today. Was knocked for 6 mid afternoon and had to take paracetamol, naproxen and codeine. Went for a bit, but then came back, and it was too early to take any more paracetamol or naproxen so I took another codeine as I had only taken 1 before. Then I started to feel out if it from the codeine, but I'm also trying to finish an assignment for uni!

So now I am on the sofa with a hot water bottle and laptop trying to finish it, when all I want todo is collapse into bed. sad

WakeyCakey Sun 13-Jan-13 22:42:52

I try to limit myself. I feel like I lost months as they put me on tramadol. I didn't even know what day it was.
The injections I had we're decepeptyl which also pretends menopause, I think that was the worst, I was terrified my body would get tricked and bring on actual menopause (at only 21)

As far as they have said my fertility seems fine, got pregnant when I was 17 but miscarried at 11 weeks and nothing since then, but to be honest I haven't tried until now so we shall see how it goes, don't even know what it feels like to ovulate (if you can feel it that is£

Wolfiefan Sun 13-Jan-13 22:47:47

Feel a complete fraud sneaking in here but...
I have had periods every 27-29 days. Sometimes heavy and painful but not excessively so.
Suddenly every 2-3 weeks. Saw GP when the last lot if bleeding kept stopping and starting over a 2 week period. I can't just continually bleed surely. Trying out the pill but really puzzled by what the heck my body is actually playing at. Taken 4 pills. Still bleeding a bit. Not impressed.

DrRanj Mon 14-Jan-13 02:31:58

Hi wolfie! Do you mind if I ask how old you are? Are you taking any hormonal contraceptives? There's no way you could be/could have been pregnant?

DrRanj Mon 14-Jan-13 02:33:48

Sorry duh! You are taking the pill but not been for long? Persevere. You may find the pill stops it but may take a while. Is it a combined pill or progesterone only? Do you have any other symptoms apart from the bleeding?

WakeyCakey Mon 14-Jan-13 09:14:25

Hey Wolfie and welcome!!
Heavy and inconsistent periods are awful so I feel for you. I agree with drranj, keep going with the pill it may help to make things more regular.
If not see your GP again they may switch you to a different pill to see if it makes a difference. You manly find you need to take a whole pack for it to kick in properly

Mamf74 Tue 15-Jan-13 12:44:09

Hello Ladies!

I have had an official diagnosis of endo since 2000, at my last lap it was diagnosed as Stage 4 and I was advised I'd be unable to have children. Cue shock all round after 9 months of Decapeptyl I fell pregnant naturally! sadly that ended in a MMC but then I got pregnant again and DD was born in 2009.

Insides are a mess, went onto the Mirena and had to have it removed as one fell out and the other was removed as my cervix is "odd" and too far back for them to position it correctly. Have been on Depo Jabs for about a year and the symptoms are coming back (despite my GP telling me it's impossible). Have just had a 4 day bleed so not sure how much longer this will suit. Was advised by my gynae to lose 5 stone for excision surgery, although the GP putting me on Depo seems counter intuitive.

Am nervous now as am with a new Gynae who I'm unsure about - was with a great lady consultant who was a total expert but we moved and it feels like I'm back to square one. Sigh.

So, hello! Can I join in (despite being a grumpy moaner grin)

WakeyCakey Tue 15-Jan-13 13:29:03

Grumpy moaner is essential!!

DrRanj Tue 15-Jan-13 13:32:19

Hi mam! Sounds like you've had a horrid time. sad

Don't have time to write a lengthy response ATM, but after lunch I will reply properly!

WakeyCakey Wed 16-Jan-13 17:20:25

Thank god it's day off today. AF has come with a serious vengeance!!
I'm trying out an app on my phone to track my periods to try and give me a better plan of action!
Had some codeine and ibuprofen and its settling but just wallowing with a box set and blanket to relax, would kill for a bath but hate doing it with AF.
Hopefully it won't last too long.
Hope you ladies are all ok today!

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