any endometriosis sufferers who can offer some advice?

[mummy2olivia]

Hi guys- am just after a bit of advice/opinions/ experiences as had a crap aapt with consultant last week!

Had my diagnostic lap back in December and got the results last week. Was so shocked by the results that I didnt ask any questions which was stupid I know but was wondering if you kind ladies could offer your opinions on a few things before I see GP on Friday....

Basically consultant says that I have mild endo on my left side and my tube is scarred (this is the bit that upset me as we have been TTC for 2 years- although she did say tube is open). Now here are the bits that are puzzling me.....

1. all my pain seems to radiate from my RIGHT side (hip, leg etc.)- now why would this be if the endo is on my left side?

2. I was on the pill when the lap was done- would this have made the endo look mild even if it was bad? I only wonder this because I had no pain whilst on the pill and now after 3 months off the pill, am suddenly in pain again! am concerned that it has got worse again and my endo is being perceived as mild and therefore I am not being taken seriously.

3. Does endo 'thrive' off oestrogen? I get pain when I ovulate, I get pain about 5-6 days post ovulation when I am told that I have a further oestrogen surge and get pain 5 days into period. Also had bad pain on pill when taking the increased oestrogen pills in a triphasic pack (I hope you all understand this!!! If not ask and I will explain!!!) Am just wondering if the pain is linked to oestrogen as I have noticed a correlation on my temp charts.

4. I get pain when I wee during my period- is this normal for endo sufferers?

5. When I mentioned the pain I was offered paracetamol only as am TTC- is this the only option? cos that only takes the edge off it! Dont get me wrong- am not doubled up or in agony but find the pain 'annoying' and it makes me grumpy and would just like some releif on the few days that I get it. Consultant did not seem interested.

6. For the purpose of TTC (am now being referred to fertility clinic) will another lap be done?

Sorry for all this- am not expecting answers! Opinions and experiences are fine just so that I can have an idea of 'what next??' consultant at appt was near to useless and just didnt seem interested in my mild endo.

Thanks in advance!!!!!

xxxxx

Sorry to hear you are suffering M2O, and your consultant hasn't been very helpful.

I don;t know the answers to all your questions but my advice would be when you go to the GP / fertility clinic, is make a list of your questions before you go, and ask if you can go through them.

I was diagnosed with endometriosis about 14 years ago and fortunately at the moment I am mainly symptom free, but I have had some bad times with it in the past

I definitely think that there is a link with oestrogen and quite likely you could suffer pain at ovulation if you have endo adhesions on or around your ovaries.

I have also found over the last few years my pain moves around - for the first few years I had a large cyst on my right ovary next to my bowel and used to get horrible pain associated with that. That cyst was removed a few years ago now, and have found that since having DS 5 years ago, if I get pain, it is more associated with my bladder and on the left.

Sometimes you can also get referred pain which is when you experience pain in a different place than the actual location of the problem - maybe this is why you can feel it on the right.

I assume from what you have said they are not going to treat your endo? I don;t know whetehr the clinic will want to do a lap - mine didn;t - they will have copies of your notes to refer to.

If you have any other questions please ask - and good luck with your clinic appointment.

hi,

1, possibly referred pain, or some endo they didn't spot or worsening since coming off pill

2, one of the 1st treatments for endo is the pill - effectively they want to shut down your system for a short time to see if it it helps. it merely masks the symptoms though not sure if it would make a difference to what they see on laparoscopy

3, yes. endo is womb lining that is growing outside the womb so it responds in the same way.. but it hurts!! most endo sufferers find the pain is worst in the build up

4, more common to have pain in bowels, but if endo has gone to bladder area same rules apply... as long as it's only when you have a period that you have the pain and it is relieved after it would be related

5, the treatments for endo involve shutting off your reproductive system... injections like a drug called zoladex which give false menopause are used or pill. pain relief then would be your only option and as your ttc it limits the pain relief further.

6, try to avoid to many laparoscopys due to the risk of adhesions so i wouldn't just have them done for diagnostic purposes. you can have the endo lasered off via a laparoscopy though (a friend conceived the month after hers was lasered)

Have posted on your Chat version, sorry, didn't know it was here too

mummy2olivia,

I had emdemetriosis for years in my younger days, numerous ops, investigations, medication, was eventually told it was unlikely i'd ever have children naturally.

We're now trying for #6

After my first pg, my endo cleared up completely, and have never seen it since. May have been no periods as i had the merena fitted postnatally but there you go.

No specific help, just a nice happy ending story for you to see and continue looking for light at the end of the tunnel.

hope it works out for you

mummy2olivia,

I was diagnosed just over 2 years now. I had mild endo on my ligaments supporting my womb which I now think has got considerably worse.
To the stage where I think it affecting my urethra (no one can quite decide!). I have had repeated UTI infections and pain. Endo can attatch itself to the outside of the urethra, bladder or other organs within body.

1. Pain manifests itself in all different areas not neccessarily where the actual pain is!

2.?

1. Oestrogen dominance is one of the factors of endo.

1. wee pain definitely

1. Use hot water or tens machine. Aromatherapy massages work wonders.

Have you tried going down the nutritional route.? Great book on fertility and endo by Dian Shepperson Mills.

HTH

hi,
i was diagnosed with moderate endo at 19. Was on zoladex for months on end and was told by several registrars/consultants that i would be unable to have children. 2months after my last zoladex i conceived.
The pill didnt work as a pain relief method for me at all it actually seamed to make my symptoms worse. Tried several different ones and was re-referred to be find out that i still had end 8 months post ds. Depo is the only method that ive found that works for me

Hi,

Have had endo since starting menstruation at 14. It was present then, I realise that now.

Bowel and bladder involvement can be seen with endometriosis so am therefore not surprised unfortunately to read of pain on urination. Endometriosis is also very much estrogen dependent though the causes of endometriosis are not fully understood.
There may also be a hereditary link present.

The clinic may not decide to do another lap due to further risk of adhesions forming.

You may want to look at www.endo.org.uk} as it is both helpful and informative. They also run a telephone helpline.

This is the actual web address:-

www.endometriosis-uk.org

Dear MummytoOlivia, so sorry to hear of your frustration and pain. I was diagnosed with endo when i was 22 (i am now 34) and i have had 3 operations to treat it (combination of laser surgery and cutting it out of my ovaries and bowel a couple of times). I had my last operation in July 2008 and managed to conceive one month later so i consider myself to have been blessed. Since having my DS in May last year I have been symptom free other than a bit of pain when i ovulate and on day 1 of my period. I understand it is very normal for endo sufferers to have pain around ovulation time and also when weeing or the other (as was the case for me)depending on where the endo is. Not sure why you can't take something a bit stronger than paracetomol (such as codeine or ibuprofen but assume that is just in case you have conceieved and you don't know it yet??) - i would maybe get a second opinion on that if the pain is really bad. Not sure if the clinic would do another lap as said above as may be not worth it if they can get results of all your other ops and location of adhesions etc. All the very best.

Hi MummytoOlivia
Some really great advice on here! just regarding your pain control question, I am TTC and I use diclofenac, buscopan and paracetamol/paracodol. It barely takes the edge off it but it's better than nothing. So good to read all the positive experiences conceiving. I have only just been diagnosed but have had the symptoms as long as I have had periods. Conceived DD very easily, but have had a lot of trouble conceiving again, so it is so good to hear that other people have got there! You could try an Endo Group meet up, depending on where you are in the UK. All the best.

Hi MummytoOlivia

I really feel for you. I too was diagnosed with "mild but acute" endometriosis when I was 23 (now 31). I was put on provera tablets (progesterone based) to dampen it down adn then went onto the pill - mercillion which I took 3 packs back to back, then had a break (hell). Yes it is oestrogen linked - hence why it improves so much in pregnancy because of high progesterone levels. I used to get pain when I had the first wee of the day during my perido - it was agony, so I guess it just depends on where the endo sites are. I foudn the best pain relief was volterol suppositries, paracetomol and another painkiller whose name escapes me (but it is commonly given for period pain).

I did manage to concieve eventually (after 1 yr) and ever since I have been symptom free, so it is true that pregnancy can make it better.

Good luck in finding all the answers to your questions.

HI, lots of good responses here so not much to add, I've had endo since 15 (now 30) been into hospital bout 3 times with it( not including the 2 lapos) and have had lapos, lazer, provera and taking the pill for 3 packs then having a break, also had numerous different painkillers ranging from plain paracetomol to co-codomaol and co-dydromol. I tri-cycled the pill from bout age 16 - 26( with a few breaks of not taking it at all) then i got pregnant after just 1 month! I found tri-cycling worked well and more or less coped with just paracetamol and tens. I also had a heat massager thing that i used on stomach area when going to bed.
Have now got ds2 but am still bf so can't go back on pill yet.
Def check if you can take anything stronger and check out the endo website as there might be something useful on there.