Is laparoscopy worth it if I'm not in severe pain? (Severe endo)

[slopp]

2 years ago now I started getting mild pains and UTI symptoms. After multiple dipstick tests (that showed no UTI) I was referred to gynae, then an ultrasound (2 cysts and adhesions), then an MRI (severe endo all over the bowel, ovaries and bladder). I've been put on Triptorelin shots to prepare for the lap and have been told to expect the worst - with the bowel affected they may need to cut parts of the bowel out, which may result in a temporary stoma bag.

However. I've never had terrible pains as lots of you girls have (just the first day of my period). And my UTI symptoms are persisting even with Triptorelin. Every consultant I've spoken to said that UTI symptoms are probably not endo related.

Now I'm sat here wondering, if I don't have severe pains and my UTI symptoms aren't endo related, is it worth going through it all? (The stoma bag terrifies me most of all). It almost sounds like I will end up worse off than I was in the beginning.

The only reason I can think of is improving fertility - but again, laparoscopy is not a promise of improved fertility, and I don't actually know for sure if my fertility is compromised.

Sat here sad and confused.

[Afrohair]

You can’t know about fertility until you try for a baby it’s really your decision in regards to lap remember there’s no cure and surgery can make things worse if your not in pain it may not be a good idea but it may stop your uti symptoms

[Moon_maiden]

Maybe write a list of questions to ask the consultant first and a copy of your post. It’s a lot to take in and seems like you have a knowledgeable consultant, but maybe not so empathic.

I have my regrets now as having managed for many years with bad periods and had similar symptoms last year, ie thinking uti but mainly not. I had lap as I wanted to know for sure, but pain was getting worse, waiting now to see if second op as in the bowel as well.

Don’t get overwhelmed and pushed into it, find out as much as you can first, including future prospects.

[sjh_1980]

If it helps I had a second lap surgery to detach the bowel after a first lap found extensive lesions. I have Stage 4 Endo and Diaphragmatic Endo.

I was warned about the possibility of bowel resection and a stoma bag but the chances were minimal. I had the surgery and there was no issue at all. I needed about 2 weeks off work for recovery.

Prior to being diagnosed I had very little pain, just extremely heavy periods. I managed it for 10 years and it was only when trying to have a baby that I was diagnosed.

Definitely ask your specialist as many questions as you need to.

[Scottoe]

Have you ever been referred to urology? If you have UTI symptoms it may be you also have interstitial cystitis (think endo and interstitial cystitis are linked so more likely to have them both). They can do a cystoscopy to diagnose this. If it is then there’s other medication you can try to help with the symptoms, and bladder instillations can also give relief as well xx

[Boxclever1]

I think you should get a second opinion. I have lived my entire life until 6 months ago with zero period pains, normal periods and no fertility issues (I am 43, and have kids). October last year ago I had a tubo-ovarian abscess, treated with antibiotics. In January, had a laparoscopy, nominally just to remove the infected tube, but the surgeon found extensive endometriosis "as bad as I've ever seen". I had an endometrioma in that ovary (surgeon thinks that might have caused the infection, since it's an ideal medium for bacterial growth) which he drained/cut out. He cut some bowel adhesions and removed the tubes as planned. I recovered very quickly, but in March, I started having pain in that ovary again and the endometrioma has grown back. Its continued to grow (despite being on back-to-back oral contraceptive pill). Its still only 2.5 cm, but causes mild discomfort, occasionally requiring painkillers. Consultant called me last week, telling me the size/symptoms don't yet meet threshold for an operation (I agree) but that when it continued to grow and the pain got unbearable, such that an operation is required, I should have a hysterectomy, with bowel surgeon present. Mind blown! I have zero symptoms other than this small foci of pain due to the endometrioma, so why do I need hysterectomy?! Consultant seems to think 'severe endometriosis = hysterectomy', without taking into account my (lack of) symptoms. I'm clearly in the small % of women with severe, but asymptomatic, endometriosis. It sounds like you may be too. I'm pursuing a second opinion to ask whether I can have just that ovary removed. It sounds to me that they are wanting to treat your endometriosis just because it's there! And it seems your bladder problems (interstitial cystitis?) are your main issue. I totally get why you are confused! I think the advice above about exploring the bladder treatments further before going down the endometriosis-laproscopy route is wise.

[Whoisthis in reply to Boxclever1]

They just love whipping out the uterus! It’s not even a cure for endometriosis!! I’m glad you sound knowledgeable, I do worry for the level of rubbish advice I read about on here.

I’d stay well clear of any surgery if it’s not needed.

[Boxclever1 in reply to Whoisthis]

Absolutely! And just to update this post, I've had my second opinion (through Best Doctors, a second opinion service offered through my employer's life assurance) and the report said the following:

"The expert agrees with you that a hysterectomy is a radical and a

highly invasive option for your gynaecological case. Surgery does

not have to be performed if your symptoms are manageable or

tolerable. The reason to treat endometriosis (or an endometrioma) as a disease is for symptom

relief or to improved on pain (or for fertility for those that desire it), not simply because someone has it. If someone feels fine, and can do what they want or need to do each day with hormonal suppression, surgery does not have to be performed. A minimally invasive left

oophorectomy or even a left cystectomy is a reasonable, more suitable option if Eloine does not control your symptoms"

xx

[Whoisthis in reply to Boxclever1]

Thank goodness! Will you go back to your original GP and educate them on their potentially dangerous and misinformed advice?

[Boxclever1 in reply to Whoisthis]

It wasn't a GP - it was the actual consultant (private) who had done my first laproscopy!!!! But no, if and when I need further treatment I will just go somewhere else. Over the last couple of weeks my very mild pain has completely gone, so I'm hopeful the pill may be all I need.

[Whoisthis in reply to Boxclever1]

I’m so pleased to hear the pains are mild, at least you know now what you are dealing with medically and who to trust if god forbid you ever do need any surgery.

I’ve gone back to my consultant, not one I used and refused to pay his fees as he was spouting out rubbish about endometriosis being caused by retrograde menstruation.

Came as a bit of a shock to me that I know more about endometriosis than all 4 drs at my local GP practice, they are all so misinformed about what it is, how it grows how it should be treated how and impacts women’s lives.

You really do need to be and advocate for this condition.

[Renee2]

Hi Slopp,

I’d like to send you a PM, if that’s okay?

[Hubabuba]

I would def get a second opinion in a completely different hospital/healthboard. If you are not in pain stay clear of surgery. Co morbidity is high post endo surgery, particularly for deep infiltrating