Options for Endo treatment

[undersoap]

I have finally had an appointment with an understanding, lovely nurse practitioner at the hospital who suspects I may have endometriosis (what I have suspected for years). She has referred me for an MRI and has mentioned different pathways to diagnosing and treating any endo they may find - namely hormonal (pill-based) and surgical (laproscopy).

Can anyone share their experiences of the two different treatments? I want to get as much info as I can in order to make the best decision.

I have reacted badly to several contraceptive pills in the past and am very wary of using them - I'm also aware that it doesn't really treat the endo so much as pause it's development. However she mentioned that a laproscopy can sometimes aggravate the area and cause further scar tissue build-up and I don't want to go under GA unless it's necessary! DH and I have no DC and have not yet TTC, but do really want children (I am late 20s) but I wonder whether a laproscopy may give us a much better idea of what we're dealing with.

I'm aware I haven't even officially been diagnosed yet, but the Dr and Nurse I've seen suspect it and I'd appreciate anyone sharing their experiences of hormonal/laproscopy intervention.

Hi under I don't have endo but my sister has had it for years, she has had a laproscopy, from what I remember she was sore for a while, I can't remember if she had GA tho as it was years ago. Her endo is quite bad, she has a coil at the moment, it's her second one now, but after this one she will have to have a hysterectomy, as she can't cope with the pain. The Dr had told her she wouldn't be able to conceive because her endo was really bad, but she did conceive a healthy baby girl. I don't think my sister was offered the pill. If I had to have a choice I would go for the MRI, as from what I have heard from my sis and friend that the laproscopy was not pleasant ( if it is the procedure where they use a dye) I think I remember both of them saying it wasn't painful just a bit uncomfortable, but I guess everyone is different.

Hi undersoap I haven't had any hormone treatment but have had three laparoscopies (keyhole surgery) to remove cysts and endometriosis. Laparoscopies are usually performed under a GA. Three small incisions are made. One by your tummy button and the others by your bikini line. Gas is then pumped into your pelvic cavity so the gynae has a clear view of your internal organs. The lap is usually done as a day procedure but you can be kept in overnight.

You are given pain relief after surgery and some to take home with you. It's normal to feel quite battered and bruised afterwards depending on how much has been done insideand ypu may get shoulder pain for a day or two whilst the gas used disperses. Recovery is usually about two weeks but sometimes longer depending on how much work has been done.

Posted too soon. Meant to say there's a good endometriosis website, endo.co.uk with lots of helpful info.

MRI scan can pick up endo lesions but is not as reliable as laparoscopy.
In the early stages of endo sometimes it is difficult to spot any lesions, mine was only diagnosed after a couple of laps when it was stage 3-4.
I suffered from endo for over 20yrs and had 3 laparoscopies during that time. Other treatments included Zoladex and my current treatment is the Mirena coil. By far the most successful has been the mirena for symptoms although Zoladex and surgery cleared enough of the lesions to aid fertility.
Zoladex is a monthly injection that puts you into a temporary menopause to allow the lesions to heal. It supresses hormone production. The lesions shrink and then can be treated surgically either lasered or cauterised.
Try the endometriosis society site. Lots of useful info and they had a good forum when my endo was active.

Thanks, it's good to hear stories of people who had a laparoscopy as I think that would be the route we go down. I really hate the effects hormones have had on me in the past and I'm aware that the benefits only last as long as you take the tablets. I think that a lap would give a much clearer picture of what we're facing - I just don't want to undergo GA unnecessarily and I read some stats yesterday that said that 1 in 12,000 women die during a lap and freaked myself out! But I'm assuming that those people would be high-risk patients anyway?!?

Those of you who've had laps (or know people that did), did they treat all the endo at the time or did you have to go back for further surgery? Was it effective or not?

Thanks for all the info, it's really helpful!

If a lap op is done it is done under GA. I have had two GAs to date and I am still here!. A lap is the usual op done if endometriosis is suspected. I have had laparoscopic type surgery (diathermy) and during that endo was found and lasered off. My menstrual cycles post lap was a lot better, before the lap I had an awful time due to endometriosis.

I was advised to have 2 days off work post surgery and was glad of that.

I would talk at some length to the cons now; you do not want just a diagnostic lap (that would likely entail more surgery) but a laparoscopy operation whereby if endometriosis is found it is properly dealt with. I would also ask the cons at some length about his experience of dealing with endometriosis cases, will he use an electrical laser or needle.

If you can find a highly skilled gynae with years of experience under his belt so much the better. Ask about similar examples and success rates.

www.endo.org.uk is a good website.

You also want during that discussion to ask about a follow up appointment a week or so to discuss the lap findings; you do NOT want to be told about the findings by the consultant whilst you are in the recovery room (this has happened to others hence me mentioning this).

You mentioned upthread TTC at some point. I understand that you are usually most fertile in the 6 months or so following a lap, as often the endo will regrow, so you might want to bear this in mind. My bf had her endo lasered away twice during her 2 years of ttc (it turned out they needed ICSI for male factor though).

i had a laparoscopy with associated diathermy to remove any endo 2 days ago, anesthetic ok but nauseous which can ve treated. incision are tiny only mildly uncomfortable but the gaseous discomfort is something else
still glad i had it done as hopefully periods will be more manageable

killed thread as usual, sorry

Thanks for all the responses, yes DH and I are now thinking about being a bit more flexible with TTC and planning it around any treatment, depending on how bad the endo is.

re. the GA, I've been through it too and am 100% sure I'll be fine, I'm just worrying unnecessarily.

Attila, you gave me advice under a previous name-change re. pushing for a diagnosis and it really encouraged me to keep going. Thankyou.

Thanks for all the responses, they've been really helpful.

I went down the pill route. Like you I have previous form for not getting on with the pill and initially had problems as I let them give me mycrogynon which doesn't agree with me.

Eventually we settled in Yasmin which I take 3 packs back to back of, so I break every 9 weeks. It has given me my life back and my pain has improved no end.

Only just noticed this thread.

I've got endo. It was diagnosed through a lalroscopy. It's a minor op, but is the best way to diagnose endo. It took me just a week to bounce back after the op, but it was about six weeks before I felt normal again.

After the op I went on hormonal therapy. It wasn't like the pill, it was a much lower and targeted dose. It was great, kept a lid on my symptoms for a few years.

Endo can impact on fertility. Also, I have endo cysts which make ivf more difficult (harder to get the eggs out). So it's a good idea to be flexible and start ttc sooner rather than later. The benefit of an endo diagnosis is (at my trust anyway) they'll start fertility investigations and treatment earlier.

Good luck.