Endometriosis - more painful periods since having it removed than before. Anyone else?

(18 Posts)
FabiOne Mon 01-Apr-13 22:44:34

Hi guys

This is the first time I've been an OP but thought I'd give it a go.

I am 30 and have been TTC for nearly 2 and a half years. Six months ago I had a lap and dye to investigate possibility of endometriosis. However, periods weren't that bad and my Gynaecologist thought it was unlikely. After the op he told me that he found, to his surprise, severe endometriosis and was shocked I hadn't had painful periods before. Since having the op I was expecting to get pregnant quite easily but it's been six months (4 of which i have taken clomid) but still no BFP and to top it all off, I have had six months of the most horrendous periods. They are so bad that I have needed to take some of the tramadol I have left over from my op (although that's now run out so dread to think what I'll do next month)

Anyway, was hoping to hear from anyone else who has a similar story to mine. Am I being paranoid that the endo has come back straight away and ill need another lap and dye in the future? Anyone else had worse periods after the lap than before? I can't help but think this will be the reason ill never get a BFP sad

Thanks in advance

RaspberrySnowCone Tue 02-Apr-13 22:03:26

Sort of similar, I always had quite painful periods but not horrific but then I had endo removed (not severe) and some months the pain is unbearable during a period, other months hardly any pain whatsoever. We did the clomid thing and it didn't work. I also now seem to have a constant pain down one side and I raised that with the consultant but he said it was something they couldn't really do anything about because it was just the endo. Then I got a letter saying that if I get pregnant that should help. I nearly drove to the hospital and twatted the consultant just for fun!!

FabiOne Tue 02-Apr-13 22:42:14

Hi raspberrysnowcone

Love that they say the best cure for endo is pregnancy. If only it was that simple! Sorry to hear your pain is worse since having it removed. It doesn't seem to make any sense does it!

I don't really know what to do for the best, I am waiting for my Ivf referral but if I need to have another lap and dye would rather do that sooner rather than later. Are you seeing any specialists about yours now or just seeing if you can conceive naturally with it?

RaspberrySnowCone Wed 03-Apr-13 07:12:02

We aren't really 'trying' anymore as we've been referred for IVF, hoping to start later this year so we thought we'd take the pressure off ourselves and have a break! Never know - might get one of those ironic pregnancies that only happen after a referral for IVF!! I doubt it though

Hi fabi - sorry to hear you are having a rough time hmm

I also have endometriosis and the doctors prescribed mefafanic acid (sorry if spelt wrong!) for when I have my period. I start taking it when my period starts and it makes them less painful and slightly lighter - before I was prescribed it I had to take time off work everytime I had a period as they were so painful but this medication makes it bearable.

Hope things start getting better for you x

FabiOne Wed 03-Apr-13 19:24:25

raspberrysnowcone - hope your Ivf appointment isn't much longer. When did you get referred? Do you know how long the wait is likely to be? I was referred in Dec but the wait for my area is at least a year sad. Hopefully your health board is a lot better than mine.

Hi mummytothearkbuilder, love your name! I have tried mefenamic acid in the past but haven't found them that good. I've got tramadol now but have been told to stick with the mefenamic acid as well. Think they work best if you take them two to three days before you come on so that it stops your uterus contracting (or something like that). Glad you find the medication helps. I assume you have a little one from your name. Did you not find pregnancy helped reduce the endo?

RaspberrySnowCone Wed 03-Apr-13 21:25:54

Hi Fabi, we were referred in January and they said 6-9 months although the clinic indicated it may be a little sooner. I tried to ring today but couldn't get hold of anyone. It's just such a long dragging wait for everything isn't it.

wifeofdoom Wed 03-Apr-13 21:29:54

I did to start with have worse periods after a lap, but they seem to have settled after 6/7 months. Looks like one of my tubes has blocked since though. I've had 2 ivfs now - but poor quality eggs it would appear are now causing problems. Hope your period settle down too.

Hi Fabi - yes I have one DS who is 4 this month and we have been trying to conceive #2 since May last year - we got a positive result in January but lost the baby at 6 weeks so back TTC.

When I'm not TTC I take cerezette and don't have any periods (which is lovely!) but as soon as I come off it the endometriosis comes back with vengeance!!

I have always been told that pregnancy will help endometriosis and we were warned it could take a while to conceive DS but it happened almost straight away - it is taking much longer this time hmm x

QTPie Thu 04-Apr-13 00:21:38

Yes, OP.

Fertility investigations in Sept found endo and endometriomas (chocolate cysts on the ovaries). Didn't have any obvious symptoms of either! Had a laparoscopy and hysteroscopy in Dec. Late Dec period was ok. Late Jan period had one "episode" that reduced me to lying on the bathroom floor (middle of the night, on holiday and sharing bedroom with DH and DS who is 3) in severe pain until painkillers worked (an hour). Late Feb period had quite a few of those "episodes" (4 to 6 probably). Last period was "back to normal", but i am mid way through an IVF cycle - so whether the drugs effected it, I don't know... Either I get pregnant or I will see what happens in the next period or two...

I did go back to see the Consultant - he was mystified....

So no, you are not alone.

I hope to get pregnant with IVF and - when I have finished trying to get pregnant - will move to drugs to try and control it. Sadly my ovarian cysts have grown due to the IVF drugs - so that a bit of a waste of time having those drained sad

JBridgman Fri 05-Apr-13 13:08:46

Two months after mime my pain started had just been hevy and irregular before now 20months on and pain is still there and all the time have bad days and really bad days

FabiOne Sat 06-Apr-13 19:18:04

Hello ladies

raspberrysnowcone - hoping your appt comes through soon for you. It's so horrible waiting, knowing that your lifes direction is in someone else's hands. Although I'm sure 6-9 months will come round quick, it doesn't feel like that when you're just waiting around for a letter to drop through the letter box. I might give outpatients a ring and see where I am on the list. It's just annoying that they do it in order of urgency. If you're older then you're considered more urgent a case and can push others back down the list even though you have been waiting for ages. (Which is no disrespect to older ladies waiting for Ivf, its just a worry that the wait will be so long that you'll move into the 'High risk' category)

wifeofdoom - glad to hear your periods settled after six or seven months but sorry to hear you now have problems with blocked tube and egg quality. The doc told me that endo can have effect the quality of the eggs but they should recover after a couple of months but every month I don't get preg it makes me wonder if I have issues with egg quality too. How do they determine what the eggs are like? Did they just discover this when doing the Ivf treatment?

mummytothearkbuilder - sorry to hear of your mc. I won't even pretend to understand how difficult a time it must have been. Fingers crossed for you for the future xx

qtpie - glad to hear I am not alone. Your 'Episodes' sound just like mine. I sometimes can only get relief by lying on the bathroom floor and crying my eyes out! It feels so bad that I dread to think what labour would be like! Fingers crossed for this cycle of IVF. Is this your first cycle?

jbridgman - oh gosh, sorry to hear that yours have been worse for 20 months now. How awful. Have you been back to doc for any future help or advice?

rad57 Sun 07-Apr-13 21:18:06

Hi, I was also diagnosed with endo, pain wasn't too bad but flared up again following recent Ivf treatment. A friend recommended acupuncture. She suffered with severe pain for years but following acupuncture has been able to go without painkillers. Thought I would give it a go and so far so good. Last period passed easily and I am generally starting to feel better.

FabiOne Mon 08-Apr-13 10:16:59

Hi rad57

How many acupuncture sessions have you had? I tried it for five weeks and was told a week before I was due on that I wasn't very premenstrual, I started to think that maybe I was preg and she said that it was possible or that I would have a very easy period. Unfortunately, nether were true. I have since given up the acupuncture although she recommends that I should have it for 3 or 4 cycles to see the benefits. At £40 a time on a weekly basis it is quite a lot of money for something that I am not 100% convinced about. How often do you have the treatment? I'm wondering whether I should try someone else.

Thanks

Fabi

TigerseyeMum Mon 08-Apr-13 20:31:21

Well, endo can often be more painful when it is mild than when it's severe. Women with severe endo often don't know they have it (I am severe but unfortunately I know it!). Less severe endo has lesions on small patches which can aggravate more than the large areas and scar tissue when it's severe, noone really knows why this is.

I'm not surprised it is worse now you are taking Clomid as I have read that it can aggravate endo quite severely.

Are you seeing an endo consultant? General gynaes are just not knowledgeable enough. And GPs are next to hopeless.

I hope you feel better soon, it's such a rotten disease, I hate it.

FabiOne Mon 08-Apr-13 20:40:30

Hi tigerseyemum

Sorry that you are a sufferer too.

The specialist I saw was a gynaecologist who specialised in endometriosis. I had severed endometriosis with no symptoms at all. Since having it removed I have had six period but only four of them on clomid. The last two I have given up on the clomid but these periods have been the worse yet. Have you had treatment to have the endo removed? Did you need this repeated? I'm trying work out what the chances are of needing another lap and dye. And if I go down the Ivf route whether success of this is affected by endo.

Thanks

Fabi

TigerseyeMum Mon 08-Apr-13 23:01:17

I have had 2 laps and lasering to destroy endo and cut through scar tissue to free up my ovaries. I also had remnants of bursts cysts they cleared away. Each op reduced pain but I back to backed the pill for years until ttc.

I am off all meds again but the endo pain comes back. I am hoping git another op to remove endo again but because of my age I won't qualify for fertility treatment now so if the lap doesn't boost my fertility and I conceive there is not much more they will do.

I may consider Clomid privately but the endo complicates it...

rad57 Wed 10-Apr-13 18:01:16

Hi fabi
I had my 6th session of acupuncture today. Have signed up for 10 (+ 2 free) at £30 a time. It's expensive especially after paying for ivf but was feeling so rough with hormones all over place etc that didn't care. Along with the acupuncture have been given various herbal tablets to take at certain times of my cycle. I am under no illusion that this will help me get pregnant but I can't deny that I am feeling better. Post ovulation I have always experienced uncomfortable lumps and bumps, headaches etc the ivf ramped these symptoms up - but didn't even get a twinge this time.

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