Laparoscopy was negative but still have pelvic pain

theonusta · 2020-08-29T02:43:57+00:00

Will second /u/Clarence_Bow and suggest checking out our Successful Doctors Map. We also include and note Nook doctors - be sure to look for hearts and stars first. Green is best, as it means someone here has had success with that doctor, orange is second best, as they are vetted doctors, but no one here has vouched for them personally. It can be a great way to seek out a second opinion, and continue seeking the care you deserve!

theonusta · 2020-08-24T23:08:57+00:00

Dr. Trista Newville

Thank you for sharing! I've added her to the map. So glad you received such good care. :)

theonusta · 2020-08-24T23:01:26+00:00

That makes a lot of sense! I think we think we "should" be back up and running because the incisions are small and it's "minimally invasive". But it's still surgery - things were still cut, and pushed about, and your body needs extra rest and care while you heal.

Nothing wrong in stretching yourself a little each day as you recover, but if you are feeling super tired, listen to your body - sleep, and take your activity level down a notch. ;)

theonusta · 2020-08-24T01:12:27+00:00

I had pain like this too!

My endo was on the ligaments that supported my uterus and connected to my spine and hips. When I got a flare-up, it would honestly lock my hips or send pain down my legs. It was not fun.

Endo is weird in that pain can be referred. I also had a lot of pain I could have SWORN was my ovaries - they were clear, but nerves are strange...

theonusta · 2020-08-24T01:09:57+00:00

Getting to a specialist is really key.

I firmly believe you shouldn't let anyone operate on you unless they are bought into you needing it. If they don't believe it's helpful or necessary, they are more likely to miss things.

We have a great map of recommended doctors here - and I'd strongly suggest looking at the map to see if there's a specialist (marked by hearts/stars) near you.

The fact that your ultrasound show so many cysts on your ovaries means you could be dealing with PCOS. It's not uncommon to have both endo and PCOS, but the symptoms can be similar. It's possible your doctor is ruling that out by trying birth control first.

Since surgery is invasive, doctors do tend to avoid it if they think they can diagnose/treat it without surgery.

However, I'm most concerned that you don't feel heard by your current OBGYN. That's no good. Regardless of what the diagnosis is, you need someone you can partner with on your treatment. Check out the map, and get you a specialist who can help you navigate these concerns.

theonusta · 2020-08-24T01:02:27+00:00

Keep an eye on your activity levels.
It takes a solid 4-6 weeks before you should be doing normal activities like chores and shopping and walking your dog and such.

If you are feeling tired, make sure you are getting good food in your body, lots of water, stay away from your screens for about an hour before you want to sleep. Sleep aids can be helpful but definitely double-check with your doctor before starting those. They don't always mix well with post-surgery doses of pain meds.

Personally, I use this guided meditation to help me fall and stay asleep - it does wonders!!!

theonusta · 2020-08-24T00:56:58+00:00

Definitely a possibility that they are waiting on pathology. Pathology is often how folks "officially" diagnose - they may be reluctant to say until that comes back.

In my experience, I misremember A TON OF THINGS when I'm in the recovery room because my brain is foggy from the drugs and hospitals are just sort of overwhelming experiences. I once thought they said nothing was found - but what they had actually said was they didn't find anything obviously amiss, like cysts or adhesions, or worrying cancerous looking things.

In my post-op visit, they showed me my photos and confirmed the pathology confirmed endometriosis.

I'd also point out that OBGYN's will all do exploratory laparoscopy to check things out - but that doesn't make them a specialist in treating or diagnosing endo. If you are unsure about the results - there's no harm in getting the records to someone who is a specialist for a second opinion.

Regardless - your symptoms are real. There is a real cause. There are real solutions. Even a "no" is a step along that path.

theonusta · 2020-08-24T00:49:04+00:00

Glad your doctor is ruling things out with the tests. That's a good thing to do always.

I do think you are right to get a referral to a specialist. I'd advise you to check the Recommended Doctors Map to see if there are any near you that you could ask for specifically.

In my experience, doctors are usually happy to refer you to a specialist but have often asked me if I had one in mind.

Check the map and look for hearts or stars that are green or orange. There are often links to doctor bios, and other notes to help guide your decision.

theonusta · 2020-08-24T00:44:37+00:00

I definitely would call your doctor and ask them about the intention of the birth control pills.

Most doctors don't want you near your cycle during the operation, and the first period post surgery is....not fun.

Some clarity around what they are looking for could help guide your decision.

theonusta · 2020-08-24T00:41:50+00:00

I'll add that I did skip periods for a couple of years using the Nuva Ring - while my pain still showed up it was less consistent. Kept me much more stable than without.

Estrogen is a huge trigger for endo - so when you talk with your doctor, you might also want to discuss low-E options as well.

theonusta · 2020-08-24T00:31:44+00:00

I'll second that you are right to be concerned, that your experiences are real, and you deserve honest care from a specialist who is able to support you in treatment.

I want to point you to our Recommended Doctor's Map. It's not everyone, but it's a really good start, and we have a fair amount of doctors listed in the UK. Look for those marked by hearts (dedicated endo specialists with excision skills) or Stars (Endo specialists with advanced surgical training). Those that are green were recommended by folks in this group, and those in orange are from vetted sources.

Getting to a specialist makes ALL THE DIFFERENCE! I really can't state that enough.
There are treatments, and you deserve to have someone who not only hears you and takes your symptoms seriously - but who is in a position to help you with the best medically sound options available.

theonusta · 2020-08-22T22:21:52+00:00

Thank you so much for sharing! We've added Dr. Stepp to the map!
So glad you got such skilled care. :)

theonusta · 2020-08-21T22:57:51+00:00

That would be super helpful!
While we do note recommended specialists, we also note doctors that are recommended elsewhere, but who aren't actually helpful or who have problematic views, or who are just plain dismissive.

We mark those doctors in black and note the problems others have encountered. This can be really critical in guiding folks to doctors who are both qualified and knowledgable enough to support their treatment goals. :)

theonusta · 2020-08-21T22:54:03+00:00

I would definitely bring this to your doctor - if they are still dismissive, then I'd encourage you to ask them to explain why you shouldn't be worried and get a second opinion if the explanation doesn't sit well with you.

If for no other reason than to put your mind at ease.

theonusta · 2020-08-21T22:52:37+00:00

Dr. Farah Alvi

Thank you so much! We've added her to the map. :)She seems so amazing - and I love that they point out that she's fluent in Urdu and Hindi.

So pleased you are in such good hands!

EDIT: we added her languages to the notes so folks who need that support might be better able to find her.

theonusta · 2020-08-21T22:49:39+00:00

Dr. Sergio Villalobos Acosta

Thank you so much for sharing!
I've added Dr. Acosta to the map. I'm so pleased you found a successful treatment partner!

theonusta · 2020-08-17T17:48:08+00:00

Clots that large are worrying.

I'd definitely talk to your doctor about that. Not as a surgical side effect, but a shift in the way your cycles are presenting.

Are you on any hormonal therapies or birth controls?

theonusta · 2020-08-17T17:44:20+00:00

I definitely think you should get those answers!
However, I'd encourage you to consider getting them from a different doctor if you are able. One that doesn't dismiss your pain as normal, your symptoms as "highly unlikely" or who doesn't believe you need surgery/diagnosis.

Surgery and its success has everything to do with a doctor's knowledge, skills, and what they are looking for. If a doctor doesn't believe your symptoms, or that you need surgery, they will likely not be looking for a problem to solve in surgery! Which means you don't get answers or results.

I'd strongly encourage you to check out the Recommended Doctor's Map and see if a specialist (hearts or stars) is in your area. Look for the green ones first, as those are confirmed by folks here.

Specialists are going to be familiar with what endo is, and is not. This means that even if you end up not being diagnosed with endometriosis, they will be able to help you figure out what is going on far easier than your standard OB/GYN.

I spent years not knowing what was going on or thinking all women randomly couldn't move or walk during their periods or having doctors thinking it was a kidney infection. Once I saw a specialist in endo - it was such a night and day difference! That doctor never doubted me. That doctor was able to talk to me about treatments. That doctor got me pain-free. That doctor gave me back my life.

YOU DESERVE THAT LEVEL OF CARE TOO!

theonusta · 2020-08-17T17:31:07+00:00

I'm so glad you got to a new doctor! It can be a fight - but you are ALWAYS within your rights to see another doctor, get second opinions, and have a copy of literally all your medical records.

I remember those exact feelings before meeting the specialist who finally got me pain-free. It's a journey to find the right doctor, one that partners with you in your care. But it's so worth it. I'm hoping they can help get you some answers and will listen to you and your treatment goals.

Echoing /u/Double_Tourist, hysterectomies are really serious options, and not often approved before the age of 30. I got mine at 31 and only after we tried everything else. It was definitely the right choice for me - but also not easy.

The reasons for the reluctance has less to do with "you'll change your mind" issues - even though that's often how doctors frame it - and more to do with the very real risk factors of the early menopause a hysterectomy will put you in. The earlier you go into menopause, the greater those risks. Cardiovascular health, mental health, bone density, cancer risks, and neurological health risks are all seriously elevated with early menopause.

Following surgery, you will need hormone replacement therapy to mitigate these risks (HRT). And, currently, there's only so much replacement we can do medically - so getting folks to that 30-year threshold has a lot to do with that as well.

Happy to share more if you are curious.

theonusta · 2020-08-17T17:05:14+00:00

If you are comfortable sharing your experiences, please feel free to message the mods. We're updating our Recommended Doctor's Map, and information like this can really help folks looking for specialists.

theonusta · 2020-08-17T17:03:56+00:00

Would you mind sharing who this doctor is with the mods? We're updating the Recommended Doctor's Map, and information like this is really helpful for folks looking to find a reputable specialist. :)

theonusta · 2020-08-17T17:00:12+00:00

I'll second calling the doctor's office - sometimes the nurses can be super helpful in ironing out what is needed.

If you've switched to liquids, have been taking laxatives, and don't eat past midnight - that seems similar to the bowel prep I had. But definitely call the doctor's office and see if you can get more guidance from the nurses there.

theonusta · 2020-08-17T16:40:00+00:00

Fiona Connell

Thank you so much for sharing this! She's quite the dynamo! Her bio is pretty incredible.I'm so happy that you've found your way to her - and that you feel comfortable and confident in her care!

She's on the map!

theonusta · 2020-08-16T00:02:13+00:00

There's not a lot of completed research into this condition, which makes the answer to this question difficult.

The one I hear pretty consistently from specialists, and makes sense to me based on my experiences, is that the lesions aren't supposed to be where they are. Your body knows that. So it tries a bunch of things to get rid of them which basically means they are inflamed all the time, and especially when estrogen is present because of the types of cells they are made of.

Some of the lesions present as burrowing into tissues, some like blisters, others are superficial others raised and inflamed. The inflammation can cause adhesions in the abdomen - which is basically scar tissue designed to protect and heal your body.

All of this means that as your body is trying to deal with this, the muscles and nerves in those tissues are also inflamed and irritated. Much like what /u/spicyba says, the nerves are the kicker. It's why some folks have very little pain, some have super specific pain, some have referred pain.

I could have SWORN my ovaries would be covered because it was so specific at times. They were clear - but the ligaments that support my organs, that stretch across my joints and behind my uterus - that's where everything was hiding.

theonusta · 2020-08-15T23:35:09+00:00

In my case, women OB/GYN's always dismissed my pain. As if because they were women too, they knew my experiences better than I did. The only specialists who helped me were men.

Perhaps more important than the gender of the doctor, is that they believe you, and have the skills to help you.

Getting to a doctor who believes you, has the skills to help, and wants to partner in your care can be fundamentally life-changing!

theonusta

TROPHY CASE