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Could I have endometriosis?

(34 Posts)
anniemac Tue 26-Jun-07 12:47:29

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Feedmenow Tue 26-Jun-07 12:54:52

No wisdom from me Annie, but I'm interested to hear what others have to say cos I've been getting various and unusual pains for about 5 months now. Have recently had swabs taken by GP and am going for a scan on Saturday.
With your legs, do you ever get shooting pains going down them, like sciatica only down the front?

kiteflying Tue 26-Jun-07 13:08:49

I have had endometriosis for almost twenty years. Ovulation pain can be a sign of endometrial cysts on your ovaries (nasty and painful) and the after AF pains you describe definitely sound like you might have some patches of endo tissue in your uterus bleeding out. If you have a long AF, or it varies from month to month this can also be a sign of endometrial pockets bleeding out. Also, if you have a brown discharge in the first days or the last days of your AF, this is "old" blood from endo pockets.
Without going into TMI you would know for sure that you have endometriosis if you have nasty pain after sex, It feels like someone stabbed you in the stomach.
Saying that though, the small number of consultants that actually bother to learn about endometriosis cannot agree on whether it makes it harder to get pregnant or not. They only agree that pregnancy is a lovely sort of cure if you can manage it. IMO, clearing out affected tissue and removing endometrial cysts from your ovaries makes it easier for babies to implant though it does lead to a bit of surgical recovery time.
I would suggest that if what I describe matches your experience you get referred to a gynae for a lapyroscopy (a half day key hole procedure that is the only way of getting an accurate diagnosis) as GPs know f-all about endometriosis, and maybe get a hysterosalpingogram to check whether your tubes are open. If they are, then the endo should not be stopping you getting pregnant unless the uterus is so badly affected that implantation is difficult.
Endo cannot affect your cycle. Mine was regular as clockwork, so you might find your short LP is to blame. Do get a progesterone test as your first line of attack. There are diets and natural remedies for short LP and progesterone top-ups.
Please don't take any of this as gospel. I am not medically qualified but have struggled with medically qualified people not knowing anything about my condition for a long time.
You will find even fertility doctors know little about how it compromises fertility unless they are endo specialists. Even then they tend to just plough ahead without factoring it in to your treatment.
Good luck. If you do have this problem it is not a cul-de-sac so don't leap into the world of infertility treatments unnecessarily. You have not been trying for that long (I know it probably feels like you have!).

manuka Tue 26-Jun-07 13:09:14

If it is endometriosis I can highly recommend herbalism as a bloody good cure. I know a number of women who suffered from that and got it sorted by visiting a qualified herbalist.

anniemac Tue 26-Jun-07 13:46:17

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muppetgirl Tue 26-Jun-07 14:02:19

I kept going to my doctor from about aged 18 'till i was finally diagnosed 22 ish by lapaoscopy.
My symptoms are
Painful sex -during and also after
Painful periods -yes having had a baby I can agree that the pains are like that of labour!
General pain -I found that even running upstairs, riding a bike could start of pain that would last for days.
Lower back pain -quite often I couldn;t bend over to pick anything up. Very painful.

I kept getting told that all was 'normal' and that it was just 'women's problem'

I have it on my tubes so can't be burnt off whilst I am of child bearing age.
I had no problems getting pregnant thought I do understand most people find they have endo when they'ev been tryhing and not succeeding -could be linked.

Treatment
I've had 6 months of continuous pill but that didn't work.
I had implant in stomach (d...something)
that put body in fake meopause, bit scary but pain sooo severe that I would have tried anything.
I then fell straight pregnant which would help to make it die down and once I've had ds2 I want a hystorectomy as I know I can't put up with it for the rest of my 'fertile' life.

You really have to push push push to get anything done and i belive a definitive diagnosis can only be given through a laparoscopy.

Again like previous lady this may not be medically sound but is just the experience I have had.
Hope it helps

AttilaTheMeerkat Tue 26-Jun-07 14:09:13

anniemac,

Sorry Annie but the possibility of you having endometriosis cannot be ruled out from
reading your opening post.

Ovulation pain at most only last a few hours, it certainly does not go on for days.

It can also play havoc with the bowels and bladder as the endometrical deposits can easily migrate there.

I would also suggest that your GP refer you for further investigations for both your fertility and also to raise the possibility of you having endometriosis.

You need to ask lots of questions and find a specialist with a good up to date knowledge and understanding of endo.

It is usually only detected in this manner - swabs, internal exams and the like will not detect its presence.

www.endo.org.uk is the website of Endometriosis UK which is well worth looking at.

Progesterone is only part of the issue with regards to ovulation - you should also be looking into having a blood test done to see what your LH and FSH levels are like earlier during the cycle. If these two levels are awry (if LH in particularly is higher than FSH then this can indicate hormonal problems like PCO) it then it will affect the level of progesterone too.

OPK's are not without their problems anyway - if you are one of many women who are producing higher than normal levels of LH the kit will read that excess.

AttilaTheMeerkat Tue 26-Jun-07 14:14:34

muppetgirl

Oh I winced at reading your symptoms - many of them are very familiar to me.

If you do decide on this option (hyst) your ovaries will have to be removed during hyst, otherwise any residual peritoneal endometrical implants will remain active. If ovaries are retained, 13% of women will have a recurrence of endo within 5 years and 40% after five years. The more severe the endo, the more likely it is to recur.

If you have endo, you will need to wait at least six months for any remaining lesions to wither away before HRT is started.

anniemac Tue 26-Jun-07 14:16:35

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anniemac Tue 26-Jun-07 14:19:27

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muppetgirl Tue 26-Jun-07 14:19:42

Ah, just remembered about the lesions!
Because your endo spots can bleed, they bleed into the wrong place and can stick things together inside which can also cause pain. I had a laparoscopy to separate lesions (is that the term?) I think this helped for a while.

anniemac Tue 26-Jun-07 14:20:45

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AttilaTheMeerkat Tue 26-Jun-07 14:26:20

anniemac,

If the person who looked at the Day 3 results did not compare the level of LH against that of FSH then the test is meaningless. These results can look okay if looked at separately; this is why comparison is so important.

muppetgirl Tue 26-Jun-07 14:28:36

The midwife said to me I was lucky to conceive so quickly as i had endo so don't rule it out!

muppetgirl Tue 26-Jun-07 14:30:10

Atilla, I always thought/hoped a hyst would get rid of it all?
They can take whatever they like if it makes it go away

AttilaTheMeerkat Tue 26-Jun-07 14:32:21

A strange thing about endo is that the disease in terms of severity is not related to the amount of pain. Women with "mild" endo can have severe pains; women with more chronic problems relating to endo can have less pain.

"My pain is not really bad, except when AF arrives, its more just that I can always (or usually) feel "something" iykwim".
I read your comment with interest Anniemac.
I would still not rule endometriosis out completely; I used to get pains leading up to and during AF itself; I had all the classic symptoms (painful periods, pelvic pain to name but two).

In general any symptoms that are cyclical in nature, and that get worse during menstruation may be due to endometriosis.

But what i really care about is anything that affects my ability to conceive, so if endo doesn't affect that maybe I should stop getting sidetracked into any sort of self-diagnosis!

muppetgirl Tue 26-Jun-07 14:36:49

Yes i heard its where it is not how much you have

anniemac Tue 26-Jun-07 14:44:01

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anniemac Tue 26-Jun-07 14:46:35

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Pitchounette Tue 26-Jun-07 15:03:31

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muppetgirl Tue 26-Jun-07 15:08:14

I have that book -very good and have leant it to many friends!

Peachy Tue 26-Jun-07 15:12:02

Annie I read your OP with interest as it is something I have been wondering myself- been ttc for 8 months now whereas ds's 1, 2, 3 took only 6 weeks each. periods always been an issue as has pain- housebound sometimes as they are so heavy for a few days- but recently they have got mroe apinful for a week or so before AF, and completely different- used to start heavy then get lighter, now I get a v ligt bleed, nothing for a few days then really heavy for a week. They've only just settled into a regular cycle too for the first time ever- typical! they've always felt like labour pains though.

I now I am lucky to have ds's so don't expect any help with fertility but I'm going to have to see GP aren't I? Though i will look up herbalism too, as interested in that approach (and hospital visits out due to complete lack of childcare- 2 with sn and a dh on call).

Good luck anniemac X

kiteflying Tue 26-Jun-07 17:04:57

The other thing that might be worth looking into is whether you have an endometrial polyp. These can be detected with a scan. Also pain causing but easy to remove with lapyroscopic surgery. As they are a "foreign body" they are a very effective contraceptive if you have one!

anniemac Tue 26-Jun-07 23:03:13

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PinkElephant Wed 27-Jun-07 08:11:50

Anniemac - Good luck with the GP, mine completey missed my endo problems and put the pains down to "hormones". Have a read on the endo website for symptoms and see if they ring true, I had a look and it fitted the bill for me. I've always had very painful periods which are always much better on the pill but when I came off it early last year to TTC I had an awful time again. I got 4-5 days of pain around ovulation and then the pain would biuld up again 5 days before AF was due. I got funny pains down my legs before AF which must be a time a referred pain and also shooting bowel pains which I thought must be IBS or a wheat allergy. After 6mnths of TTC I had an ectopic and therefore was under the care of a lovely Gynae Registrar who said it definately sounded like Endo but that it hadn't hindered my chances at conceiving and to TTC again - any problems and they would investigate. I had an HSG xray as part of my ectopic recovery and this confirmed my tubes weren't blocked. Now I'm preganant again.....Lots of luck to you x

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