Endometriosis

[stella123]

I'm not sure if this is the right place to post, as i'm not actively TTC.
I got my referral today to see a consultant regarding suspected endometriosis.
My GP mentioned that I would probably be offered an injection to temporarily cause an early menopause to see if my endo is hormone related.
I do not want to do this, no matter how much they try to convince me - playing with mother nature is a hazard, as I have learnt from the past.

She suspects that the consultant will arrange a laproscopy for me for a couple of weeks after the consultation. Do any of you have history of this?

I'd really appreciate the advice. I've often posted in the WWT forum, and got no replies.
All I've ever wanted is to have children, and it scares me that my fertility may be in jeopardy.

Thanks xx

 

[teapot]

I'm not sure if this is the right place to post, as i'm not actively TTC.
I got my referral today to see a consultant regarding suspected endometriosis.
My GP mentioned that I would probably be offered an injection to temporarily cause an early menopause to see if my endo is hormone related.
I do not want to do this, no matter how much they try to convince me - playing with mother nature is a hazard, as I have learnt from the past.

She suspects that the consultant will arrange a laproscopy for me for a couple of weeks after the consultation. Do any of you have history of this?

Hello,

If you have told the Doc that you are not TTC, that's why they'll suggest shutting down your hormones for a bit to see if the symptoms improve.

It's best to say that you ARE TTC. That way, they won't mess with your hormones & you'll be sent for a Laparoscopy. If they find endo, they do their best to laser it away during the Lap & they usually check your tubes are open at the same time.

I had my lap & dye in March, he did find endo & removed as much as he could. It would be much better for you have a lap & any investigations now, rather than leave it (like I did) & feel like you're taking backwards steps in a year or twos time.

...Re where you've posted, I only noticed your post because it's titled Endo, but you've posted in Secondary Infertility, you need to scroll down a bit to get to the LTTC board.

Best of luck to you. x

 

[looknomore]

Hey Stella- the injections that you are talking about are GnRh agonist. These are usually taken for 3-6 months 1 injection every 28 days. these injections put the body in a state of menopause. usually an add back dose of HRT is added to minimise side effects which r the usual ones of menopause- hot flashes, vaginal dryness, low libido, forgetfulness and some bone density loss. The cycle comes back after the injections are stopped in about a month or 2. This treatment is the most effective treatment for endometriosis.

Having said that- if ur doc is just suspecting Endo then an investigative laparoscopy should be done. GnRh a is a very strong medicinal regime and cannot be given on a hunch that u have endo. If the endo is not very severe then it can be removed in the Lap itself.

I have done a lot of research on this subject as I have also been advised to take these injections after my Lap. These injections kill Endo completely. I am currently trying an IVF to see if I can avoid these injections. My IVF success rate is lower because of the endo even after a lot of it was removed in the Lap. So, if it doesnt work, I start the injections from next cycle.

Hope u have some answers now. But pls note that i am not a doc so this is just my opinion. Your doc would be able to guide u better. All the best

 

[inperfected]

Having also done research I am not happy with having the treatments unless 1200% neccesary (i.e. very severe when they get in there).

The best treatment for endometriosis is 100% excision. This is verified by endometriosis.org as well as the other endometriosis organisation specialist sites. Unfortunatley they dont' actually 100% kill endo, but stop the symptoms for a while. I'd say the best site to research on is the one above that I said about...

 

[looknomore]

Hey Inperfected- 100% excision of Endo is not always possible like in my case where I had Grade 4 endo which basically means I had endo all over the pelvic area. The doc did not touch the endo on the intestine as any damage to the intestine can be very problematic. Hence, the injections after the Lap. These injections are always in combination with the Lap and take care of any remaining endo and are usually prescribed for Grade3/4 deep pelvic endo.

 

[fifi-folle]

I would say your GP should not have even mentioned GnRH agonist at this stage. You need to have a laparoscopy to diagnose endometriosis. Why does your GP think you have endo?

In my case I had problems for 8 years before diagnosis (pain, clotted bleeding on AF, mid cycle pain, spotting after intercourse, cysts, pain down legs, lower back pain, nausea, etc etc). I have had 2 laparoscopies, both removing endo, after the 1st one I was still in pain so went on Zoladex, still had pain (but no AF, yay!) so had another lap, more endo had grown whilst on Zoladex, so was told to get on with ttc while we can. I am in constant pain and have been given no other treatment options whilst we are ttc other than painkillers. There is no 100% treatment/cure for endo, it's a progressive condition and you can have a temporary respite whilst on treatment, or after laps, but nothing cures it.

Also your GP didn't explain temporary menopause injections well; all endo is hormonal, it feeds off oestrogen, growing as your womb lining grows and sheds when you have your period, but the endo bleeding has no where to go so can form scar tissue and adhesions.

Although my story is a bit bleak we have conceived several times and are working on getting one to stick! Also endo varies from woman to woman, some have problems conceiving whereas others don't, and it doesn't always match with how severe the endo is.
Really hope you don't have endo but the laparoscopy is the only way to find out for sure. Good luck with the consultant!

 

[hanzy29]

hi hun,

i had endo lasered away in a laproscopy in march 2004. i wasnt trying but the pain around af was horrendous. i unexpectedly fell for my son on april 2005. (was careless with pill ) best thing ever!!! lol decided to start trying again in january 2008 and have benn trying ever since. i had a second laproscopy in 09 and they found 2 more spots of endo (very mild) and took them away. didnt make any difference to getting pregnant. however i have just had the preliminary tests done for ivf egg sharing and turns out that despite my endo history and that iv been having a few twinges recently my amh levels are optimal which is really good. so endo or not it doesnt seem to have affected my overall fertility. i dont know if this helps you or not, but endo can be fixed and you can be a mum after it. im proof!!! xxxxx

 

[Dilek]

Not all endo can be lazered away cause there is so many places it can be hiding. Just wanted to clarify that,thats why having the injection after can be a good idea. But i only took it cause mine was grade 4 and very aggressive. it would grow back within weeks of surgery.

 

[bubble35]

Hi sorry to hear you are all suffering with endo. I have been diagnosed for 9 years. After many trips to doc finally got a diagnosis but by then endo was pretty bad and had a laporotomy and ovary removed and endo tissue cut away (too much for laser). I then had a course of hormone treatment to bring on a menopause (nasal spray not sure they did injections then) side affects not nice but did give me 3 years no pain. After a while pain reappered and I took a second course of hormone treatment. By this time had met my wonderful husband and we concieved straight after treatment and have a 3 year old beautiful boy that I thought I would never have. Symptoms started to come back about 6 months ago. We have been ttc for 18 months and had at least 1 chemical pregnancy and suspect 2 more but won't test till at least 2 weeks late with period. I have just had a missed mc thought we were 10 weeks but stopped growing at 7 weeks. It's all very hard and certaintly don't take fertility for granted now (i'm 35) but hope my story helps after everything that has happended still have an amazing boy and not given up on a brother or sister just yet. Good luck to all x

 

[Candy-panda_x]

Hiya
not much help as i didn't have endo, but I had suspected endo and it turned out to just be a large cyst that they removed with no problem. It took about 2 months after my consultation before I had my laparoscopy though, hopefully you'll get yours sooner

Good luck xxx

 

[stella123]

I'm so sorry it's taken me so long to reply!
Thank you so much for all your advice and experiences.
I've got my consultant appointment next Tuesday (9th Nov), so we'll see what the gynae says re: laproscopy.

Will be sure to update then
Thanks ladies x

 

[stella123]

Hi girls. Just an update:
Had my consultation this afternoon, and after an internal and a chat he has decided to go ahead with my lap.
I should expect a call from admissions tonight or tomorrow with a date, but he thinks it will roughly be end of December/early January.

He mentioned that endometriosis is likely due to symptoms and family history of it. But what he did say, which I'm not too happy about is "I don't like doing them on young women, I mean, if I do find endometriosis adhesions, well it's not exactly good news for you"
I felt this was really unprofessional of him to say.
But at the end of the day, I got what I went for. Just can't believe it's taken nearly 5 years!

Thanks again for all your advice over the past couple of months xx

 

[inperfected]

That's ok Stella.. It's great to hear you have gotten the appt though. I know that the more op's you have the more chance of further adhesions from the surgeries (not endo, just just adhesions...).

I had my last surgery brought forward because I was in heaps of pain and it ended up being that my bowel was adhered, but in saying that, not everyone gets pain by any means.

 

[fifi-folle]

It might not be good news but it's better to know what is going on rather than worrying for an endless period! It took me 8 years to get diagnosed and by the time they did there wasn't much they could do. Glad you have your op sorted. If you have any questions about it just ask. Here's a link I share to everyone going for a lap it's full of handy tips...
lap tips

 

[stella123]

fifi those tips are brilliant!
i am a member of that forum, but hadn't come across that thread as it hadn't been bumped up in a while.
do you have to remove every piece of jewellry when in surgery?
obviously i'll remove my naval piercing, but i also have a nipple piercing (thought it would be a liberating thing to do when i split up with ex - stupid idea, very painful) and i was wondering if i need to remove that too?

my lap is booked for 5th january, and i have MRSA screening 22nd Dec!xx

 

[fifi-folle]

The only jewellery I was allowed to keep on was my wedding band, that was covered by a piece of micropore tape. Not sure about nipple piercings I'm afraid. You could maybe ask the nurse that does your MRSA swabs.

 

[floofymad]

I had to remove absolutely everything! Including my hair bobble, which has a teeny little metal joint.

 

[nimblejim]

Hi

I am not sure if this thread is still going. I have endometriosis and at times have had awful symptoms (nausea, constant cramping, very heavy periods, fatigue). I am 38 trying for #2 and have had 2 miscarriages in the last year and a half. I have only been diagnosed with endo this year. The consultant said that I should hold back on having surgery and keep trying for a baby. I do find that diet and lifestyle choices make such an impact on my symptoms. If I do not eat red meat, wheat and diary (chocolate is a real baddy) and do lots of exercise and meditation I feel so much better. Meditation is fantastic, I really would recommend it. I am determined to be positive and keep going. I am trying preseed and really enjoy using it as sex can sometimes be painful. I am not trying any fertility herbs as they can exaserbate my endo symptoms. I would love to be in touch with other endo sufferers who are ttc.

 

[fifi-folle]

Hi

I am not sure if this thread is still going. I have endometriosis and at times have had awful symptoms (nausea, constant cramping, very heavy periods, fatigue). I am 38 trying for #2 and have had 2 miscarriages in the last year and a half. I have only been diagnosed with endo this year. The consultant said that I should hold back on having surgery and keep trying for a baby. I do find that diet and lifestyle choices make such an impact on my symptoms. If I do not eat red meat, wheat and diary (chocolate is a real baddy) and do lots of exercise and meditation I feel so much better. Meditation is fantastic, I really would recommend it. I am determined to be positive and keep going. I am trying preseed and really enjoy using it as sex can sometimes be painful. I am not trying any fertility herbs as they can exaserbate my endo symptoms. I would love to be in touch with other endo sufferers who are ttc.

Sorry for your losses. It always surprises me how different consultants advise different things. When you were diagnosed did they also remove the endo? (I'm assuming you had a laparoscopy to have it diagnosed) A lot of doctors suggest that immediately after removal of endo is a good time to conceive (once you've recovered of course). It's good that you have discovered some triggers for your endo symptoms! We took 18 months to conceive this little one, with four early losses whilst we were trying. Hopefully you'll get your sticky bean soon! The only thing I have done differently this time is a low dose aspirin as all RMC tests came back clear.
Good luck!

 

[nimblejim]

Hi, I didn't have a laparoscopy but just a consultation with the consultant who just did a basic physcial examination of me. I do not know how severe my endo is. He told me that even if I was to have the endo removed it could come back straight away and that because I have had one child and two miscarriages I do not have a problem with concieving. He said that the endo did not cause me to have a miscarriage but my age was the reason. I know so many people who have had miscarriages. I have been through some horrible times with my endo so I suspect it is pretty bad but I am determined to not let it beat me! What is an RMC test? And what is the low dose of aspirin supposed to do? Congrats by the way! I love hearing success stories.