Apparently I have endometriosis

[CurlySue]

Jeez I can't believe you have to wait so long for answers. That really sucks

My card says "next available appointment" as well. That literally was the soonest.

I don't even know what this is for. When I went to my first appointment they told me that everything would be dealt with at once. So, do I take OH and risk ruining his birthday?

 

[wannabmum]

Ih huni this is absoloutly terrible but bloody typical of hospitals, I would get in touch with the hospital explane the fact there lack of info is causing you concern and have them explain it, I understand what the other girls are saying about getting ur gp but tbh there not much point, GP's don't tend to know very much when gets in to infertility etc mite be best talking to hosp just to be sure u get correct info.Hope u get all sorted soon

xxx

 

[Sinead]

Just wanted to send you some

 

[CurlySue]

To be honest my GP WAS useless. For one thing she looked at my blood test results and said “They are all good. Very good” when, as soon as I saw Gyno she told me that two of my hormones were imbalanced and out of whack.

I don’t trust my GP any more.

 

[pixielou]

Hi Curly Sue, hope you find out soon what is exactly going on!
I tried to ask my consultant if I could have lap op but he said no!
So, like you my tubes are clear but unlike you have no idea of whats going on!
X

 

[pixielou]

Hi, I was diagnosed with endometriosis aged 20 in 2004 after years of "problem" periods. Unfortunately it's a little known disease, and many Drs in the UK (and the rest of the world) haven't a clue - before you have any surgery to remove it please make sure the surgeon in charge is an endometriosis specialist, as my first surgery was messed up thanks to me not knowing much and putting my trust in Drs. I've been very lucky with my treatment in Switzerland.
Some people have thick layers of endometriosis but never know until they can't get pregnant. Others like me have patches, but because of their position it can be crippling. Mine was in my bowel and pelvis. I was treated (and so far it hasn't come back) with hormone therapy which brought on a temporary menopause and acupuncture, followed by two pregnancies (which didn't survive, but I really think they helped clear up the endo).
Having endometriosis doesn't mean you're infertile, there are changes you can make in your diet that help, and many different treatments to consider. I would be wary of surgery as it can cause more problems - I had surgery to remove my appendix in 1999 and the surgeons here think that one fallopian tube subsequently became blocked from debris left in after surgery and endo grew on that(I had it removed last April). Apparently the blocked tube was causing mc as it was flooding the uterus with poison.
When I moved to Switzerland, I noticed even before starting treatment that the change in my lifestyle, ie a lot less stress, really made a difference to my condition.
Annnnd pregancy often erradicates it, one of the best cures It's not 100% foolproof, I know it comes back for some people even after pregnancy, but for a lot of people it stops it forever.

Hi Faerie, that was really interesting to read yr info. Are you stil ttc?
Unfortunately my doc won't give me lap op and says that it's a isk and that it's too expensive on the NHS. They have sent me for a blood test CA125, which aparantly can see if you have endo(don't see how)

Anyways, b=very frustrating as I did have a double hernia op in my groin when I was younger and maybe the endo might have adhered to this or whatever. Only recently they said I have PCOS and even then I had to push them as they said they saw something and then said nothing else! So I'm really sceptical at the moment.
X

 

[Faerie]

Hi Pixielou! Yes, I am still TTC.

Now that I'm more clued up, I would definitely view surgery as the last option for endo, as it can often lead to even more endo growing. It should definitely be followed up by hormone treatment or it's a complete waste of time (the hospital were meant to do that for me, but they kept cancelling my follow-up appointments for nearly a year! By which time it was too late. If I hadn't been so young maybe I'd have stood up for myself more).

I understand that people are wary of hormonal treatments, and it's certainly not a plesant experience. I was on it for 3 months, so basically had the menopause for 3 months, not nice and really makes you sympathise with your mother!! I found accupuncture really helped me during that time, with the pain and hot flushes. BUT 3 months after coming off the treatment I was pregnant. Unfortunately we didn't know the tube was blocked at that point.

I've never ever heard of endometriosis being found by a blood test, but then I'm not a Dr. Does sound odd. Perhaps you could ask about it on the UK endometriosis society website?

 

[CurlySue]

I was never even offered a blood test to check for endo, Pixie. That sounds like shite to me.

 

[Faerie]

I was never even offered a blood test to check for endo, Pixie. That sounds like shite to me.

Yeah, it really does! I've been diagnosed and treated for endometriosis in 3 different countries and have never heard of it!!

 

[monkey6768]

Hi Curly Sue,

Your situation is similar to mine, although luckily I have private medical, i still had to wait 4 weeks for my follow up appointment after my LAP and DYE.

The outcome was Endo and previously been told i have PCOS. When was first referred before diagnosed with ENDO, i was told CLOMID was a possibility, but my consultant has advised surgery is prob best. So im booked in for2 weeks time to have ENDO cut away.....just hoping this is the best thing to do and then hope will concieve.
Anyone else similar to me? Would be really helpfull to hear from you.

Fingers crossed they have some answers for you at your follow up! let us know how you get on

xx

 

[trickytrouble]

Hi,

Even though I dont have endo I have bad PCOS and had a cyst removed (probably more to be removed ggr) and although that is not the same thing, we are all in the same boat regarding TTC I have, however, read several recent journals and articles on endo (and also have two close friends with endo) and apparently the operation where the scarring is cut away is MUCH better than the operation where the scarring is lasered away as apparently the scarring grows back quicker when lasered as oppose to the slow (if any) regrowth of scarring after having it cut away.

Wishing you the very best of luck with your operation and with your future BFP

TTx

 

[Sarah+]

Hi there Endo can cause problems when ttc, but not necessarily. About 1 in 5 women have some endo, but most of them don't know it. Some people find out when they get pain, some when they have trouble ttc, and others never find out because it never causes any troubles.

I had mid-cycle bleeding and bad pain starting 6 years ago and went to a couple of GPs and gynos who said it was probably endo, but the ONLY way to diagnose it is by physically having a look (i.e. lap) and that wasn't probably warranted (I wasn't ttc then and only 23). The doctors prescribed me a stronger dose of The Pill, which did help with the bleeding.

Then 3 years ago my latest GP (we move a lot) referred me to an Endo specialist. He did a lap and removed all my 'moderate' endo, mainly from the right side, which surprised me as most of my pain was on the left, but he said this is not uncommon, and there is often no relationship between the amount and location of the pain, and the prevalence of the edno. He used special sprays and dissolvable stitches to keep my ovaries out of the way while I healed, so I didn't get scaring, which can be a problem when ttc.

I asked him about endo and ttc and he said that it can make it harder, but many women with endo have no troubles conceiving. He said that from looking at my uterous, he couldn't see any obvious reasons I would have trouble ttc, and the only way to find out was to try! Something interesting - he said my chances of conceiving were MUCH higher now, after the surgery, than before. He also said if you know you have endo, and you're having trouble conceiving, seek treatment sooner rather than later and don't let drs tell you to go away and give it 'a year'.

I was very lucky to find this specialist and he fully explained everything the next day in hospital (I even have some lovely internal photos of myself!). I'm so sorry you have to wait for answers, because as we all know, waiting is the hardest part. I've only been trying for a couple of months but I'm hopeful endo won't cause me problems.

Very best of luck

 

[trickytrouble]

Hi there Endo can cause problems when ttc, but not necessarily. About 1 in 5 women have some endo, but most of them don't know it. Some people find out when they get pain, some when they have trouble ttc, and others never find out because it never causes any troubles.

I had mid-cycle bleeding and bad pain starting 6 years ago and went to a couple of GPs and gynos who said it was probably endo, but the ONLY way to diagnose it is by physically having a look (i.e. lap) and that wasn't probably warranted (I wasn't ttc then and only 23). The doctors prescribed me a stronger dose of The Pill, which did help with the bleeding.

Then 3 years ago my latest GP (we move a lot) referred me to an Endo specialist. He did a lap and removed all my 'moderate' endo, mainly from the right side, which surprised me as most of my pain was on the left, but he said this is not uncommon, and there is often no relationship between the amount and location of the pain, and the prevalence of the edno. He used special sprays and dissolvable stitches to keep my ovaries out of the way while I healed, so I didn't get scaring, which can be a problem when ttc.

I asked him about endo and ttc and he said that it can make it harder, but many women with endo have no troubles conceiving. He said that from looking at my uterous, he couldn't see any obvious reasons I would have trouble ttc, and the only way to find out was to try! Something interesting - he said my chances of conceiving were MUCH higher now, after the surgery, than before. He also said if you know you have endo, and you're having trouble conceiving, seek treatment sooner rather than later and don't let drs tell you to go away and give it 'a year'.

I was very lucky to find this specialist and he fully explained everything the next day in hospital (I even have some lovely internal photos of myself!). I'm so sorry you have to wait for answers, because as we all know, waiting is the hardest part. I've only been trying for a couple of months but I'm hopeful endo won't cause me problems.

Very best of luck

What I find mad is that some women with severe endo AND severe PCOS fall pregnant easily and yet others dont it really is swings and roundabouts. I too have been told (after 30 months) that I will have no trouble conceiving even with PCOS and yet am not pregnant !!

Good on you though for being completely positive and the very best of luck

TTxx

 

[pink_glitter]

Sorry to hear of your problems hun, I too was diagnosed with spots/slight endometriosis which had effected pouch of Douglas (whatever that may be)!

However at the time was not TTC and they put me on Depo to stop pain, which unfortuanlty itself has caused me further probs now i am TTC.

i did ask my GP and consultant and they said the endometriosis shouldnt really effect my chances of concieving as its only spots and as my tubes are clear.

When you say you have irregular periods do you have too many or too few?

 

[CurlySue]

My periods are all over the place, severely painful, I am not sure I ovulate every month also.

Sometimes my cycles are 23 days. Sometimes I miss three months. I average (going on the past 12 months or so) around 39 days per cycle. That is because some have been 23, some have been 50 plus. Going on temping, I probably ovulate around 50% of the time.

My doctor also told me that my hormones were imbalanced...

Thing is, I have been thinking alot about it. I stopped taking the pill in Christmas 2005. Was not actively TTC for the rest of the time but I was having sex regularly (since I only got married last year and was still at that stage) and I have never once been pregnant.

So...in almost 3 years, I have never been pregnant. I never actually realised how long it had been until I really thought about it. I know that I was still on the pill on holiday in June 2005. I know that I had stopped taking it the Christmas following that.

If not the Endo then I do not know why I am not pregnant. That's what worries me.

 

[brenda22]

Hi Faerie,

I have endometriosis, have relocated recently from South Africa and I am looking for a specialist in endometriosis in Basel. Can you please give me some names?

 

[brenda22]

Hi Faerie,

I have endometriosis, have relocated recently from South Africa and I am looking for a specialist in endometriosis in Basel. Can you please give me some names?

 

[brenda22]

Thank you for answering so quick. I don't seem to find my way around this site yet. It took me a long time to find this tread again. I have tried to add you to my contacts\ friends but that did not work either.
Anyhow I am in Gundeli, I work in Klein Basel and any names would be welcomed (if the gynae speaks English this is a bonus!). I have not seen a gynae for nearly a year and have currently some pains. Since my account is so new perhaps I don't have all the rights yet. I will try to find you tomorrow again.
Best regards, Brenda

 

[spacegirl]

I have severe endo. Endo. does not mean you are necessarily infertile. Experts still don't understand its effects and why some women like me have no symptoms and others have pain and heavy periods.

Here is an article which gave me hope when I was TTC and concerned endo. may hinder my success. It made me feel better:

https://humrep.oxfordjournals.org/content/11/suppl_3/103.full.pdf

GL girls xxx

 

[ecs]

Hi, I was diagnosed with endometriosis aged 20 in 2004 after years of "problem" periods. Unfortunately it's a little known disease, and many Drs in the UK (and the rest of the world) haven't a clue - before you have any surgery to remove it please make sure the surgeon in charge is an endometriosis specialist, as my first surgery was messed up thanks to me not knowing much and putting my trust in Drs. I've been very lucky with my treatment in Switzerland.

Faerie, I was wondering who your seeing Basel. Looking for a doctor to determine if I have endrometrosis in Basel but having a tough time with doctors who can figure out what's going on or that speak english. If you've got a recommendation please let me know.