Advice - is it endo? Laparoscopy booked but at my wits' end...

Women's health
1

Hi Everyone, 

I am really suffering at the moment and despite trawling the Internet, I am not sure what is going on. Anyone who could reply to put my mind at rest would really help me. I feel lost and alone right now. Here's my story, but there's so much to say so if you can help me just feel sane, or tell me if any of this is familiar with you I would be ever so grateful:

My periods from a young age 

I started when I was 11 and they were always painful, probably more so that other people's - but it's hard to know. With this I would always have diarrhea and a hot water bottle would be my best friend. But I cracked on, as we do, and ignored it by not going out or being sociable at those times. I would go to work and have a hot water bottle on my desk chair. I didn't think anything was 'wrong' I just thought that it was what women had to put up with.  My husband mentioned that he had never seen a woman doubled over like I was - but I thought maybe I was being dramatic. 

My periods changed over a year ago

Then I noticed I was spotting a lot, but my periods were definitely different. They were erratic and sometimes heavy (bleeding through clothes) but sometimes not heavy at all. I would spot dark blood first, then it changed to pink and then it stopped for a few days before that started again. But then I would have nothing for a few months and so I spent some money convinced I was pregnant (oops). I wasn't pregnant but I was always cramping and aching feeling like I was about to start and then I didn't. 

So, I went to see a Gynecologist

Who thought it could be PCOS and gave me a Mirena Coil. No blood tests were done but I had an ultrasound (internal and external) which showed my coil was in the right spot and nothing else. She mentioned my right ovary was close to my uterus, but that was probably fine. No follow up. No more tests, but I could come back if the coil wasn't working out for me. 

The Mirena Coil

Gosh, it hurts for a while, right? Constant cramping and a few emotional tears - but you know, it did settle down and it stopped my periods apart from some spotting occasionally. So I was OK for a while - kicking some butt with combat training down the gym and going to work.

So, I though that was that...until

I got on with my life for the next 3 months, I got through most days pain free with some cramping but no bleeding or anything. But then last November I started to have other symptoms. I noticed blood in my urine and over the next few weeks I was having some lower right quadrant pain and back pain in my right side. It didn't feel like a UTI (I had had a fair few before) but I felt off, crampy and I could see that my urine was strange. I was having diarrhea and felt bloated all of the time. So, I saw a GP who gave my antibiotics and sent me on my way. 

The drugs don't work (tune!)

I had 7 lots of antibiotics which didn't work - they thought UTI, perhaps PID but cervical smear and urine tests showed nothing. My urine was culture free but consistenly had blood and protein in it but the pain - oh it was bad. I stopped going to the gym, put on weight and my mood was just low, low, low. I didn't know what to do with myself. I took time off work for a few days and then signed a flexible working agreement to allow me to work from home (this has been the case since early Jan)

So, I headed to A&E

I had a slightly raised temperature, my bloods showed minor inflammation and I stayed overnight. They diagnosed me with kidney stones which they said had probably passed in the night. They sent me home, still in pain and with no answers. I am sure I did not have kidney stones. I was basically just dismissed. 

I went back to my GP several times - Appendicitis??

Actually, several different GPs who I am sure thought I was crazy. But one GP said she thought I had appendicitis. Off I went to be admitted to Surgical Assessment Unit. I was very dehydrated, in agony and was tachycardic. But they didn't think it was my appendix. In fact they didn't have a clue what was wrong (still thinking I am crazy I am sure) and sent me home with a referral to urology. This just didn't seem right to me. I mean, my toilet problems meant that I was in a lot of pain when having a bowel movement, usually diarrhea and the pain was nowhere near my bladder. A CT scan showed nothing. 

Referred to Gastroenterology

So, I went back to GP in tears. I was working from home because I can't travel and feeling truly isolated and like everyone thought I was just dramatic. Any excursions out of the house exhaust me and I end up in a lot of pain [stabbing right sided specific location (ovary?) and back/hip pain and general cramping]. I insisted on being refered to a GI. Several weeks later, the GI saw me. He was the first person who listened and seemed to care. I told him about my symptoms - realising that very thin stools was not normal and  he wanted to test me for Crohn's Disease. I had an endoscopy, colonoscopy and an MRCP (to check for gall stones in my bile ducts since I had my gall bladder removed in 2011). Nothing apart from a few benign polyps in my rectum were found. He thought I needed to go to see a gynecologist.  

Full circle - referred to Gynae again

A different doctor this time (phew). Who listened and said that the GI had flagged that I could have endometriosis. He also wanted to check for PCOS and was annoyed that my last gyne did not take any bloods. The blood I got taken last week showed normal levels of hormones and showed that I was not menopausal (I am 37). He did an internal examination and said I was inflamed down there but he could not feel any nodules of endo. I am now booked in for a laparoscopy on 15th Aug. 

What if? What next?

So they think maybe endo, but the gynae doesn't know because I am not having periods due to the coil. So it is possible, but I have had so many negative results from other departments, I feel like I am losing my mind. I am depressed and I don't know what I will do if the lap comes back as clear. It is no use having a full bill of health if you can't function due to pain and exhaustion. Is there anything else I can check is this is negative? I really hope that perhaps some of you who have been through something like this can offer me your experiences so that I can cope while I wait for this hell to be over. 

Summary of current symptoms:

- no periods but spotting due to Mirena

- pain in lower right quadrant right over ovary. Sharp/stabbing/intense

- lower back pain, right hip pain, right rib pain

- bruised feeling on right side

- blood and protein in urine

- painful bowel movements

- diarrhea and constipation

- nausea

- depression and insomnia

Meds

I am currently taking codeine (60 mg 4 times per day) amytriptaline (20 mg per day)nparacetamol and ibruprofen max doses. The hot water bottle is my friend. 

Pain threshold

I feel I have a high tolerance for pain. I gave birth with no drugs. It hurt, but I coped. 

Thank you for managing to read to this point.

All the best to you and I hope your journeys are going smoothly.

Bex xxx

 

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I forgot to mention the pain during sex - specifically orgasm (sorry TMI) but it felt like a tight band wrapping around my uterus just when it should have felt good. Not so much romance happening anymore anyway...

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I have had symptoms since I was 11 too. Mine got worse 4 years ago. I had a diagnostic lap in August and I was diagnosed with endometriosis. Everything you described is basically endometriosis in a nut shell. The a&e visit the ‘its an appendicitis’ the gastro tests. Can I also suggest you ask them to check for interstitial cystitis as it is extremely common for woman with endo. I am 26. It has ruined my life. I am waiting on a second operation. Tips for your laparoscopy day. Take something comfortable to travel home in. Also take a cushion for the car journey as it can be a bit uncomfortable so you can put it against your stomach and the seatbelt over. Stock up on peppermint tea or peppermint capsules (capsules work better) make a little den have things there for you like snacks, books, movies ,drinks but try and walk around the house every hour to keep the gas from travelling to your shoulders. I am glad you’ve finally been booked in. It is such a long long process. Can I ask is your consultant a specialist in excision surgery? That’s the type of laparoscopy you want excision surgery they peel away Endo instead of just burning it away. I hopefully you’re okay. Also try ice packs it’s reslly good for inflammation than heat x

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That definitely sounds like endometriosis. It can spread from your uterus to other organs. It sounds like you have it on your bowels and bladder as well as your uterus. Pain with sex is very common and I have a lot of pain with orgasms too. It is extremely painful and birth control that stops your periods is only to help with the pain symptoms. It does not slow endometriosis from spreading. Your tubes could also be blocked from it. I'm really happy that you are going in for a laproscopy. My advice is to make sure that they do an excision to get rid of the endometriosis not ablasion. I would join a group on Facebook for endometriosis if you can. There are so many women going through the same thing that you are. It's a lifetime battle as it doesn't go away. Being your own advocate is really important because endometriosis is often dismissed as you've experienced. The diagnosis is so important. You will know what your options are after your surgery. If you are told that you need a hysterectomy really weigh your options. Most time specialists (not your obgyn) can give you more options than that. You can get endometriosis even after a hysterectomy. I go for my procedure August 7th. I've learned a lot on a ttc with endometriosis page and Nancy's Nook page on Facebook. Learn as much about endometriosis as you can before your procedure. It really helps. If you have any questions or you just want to talk let me know.

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Thank you so much for your reply, Tiffany-Marie. It's really good to feel i am not alone. My gynecologist said they were unlikely to do anything on the 1st lap as they just want to diagnose but he did speak about burning the tissue away on the 2nd one if they fins some. At that point I think I will have to shop around for someone who will do the excision surgery because I have also read that this is the most reliable way for it not to return. Thanks for the tips re Facebook pages - I am definitely going to sign up and do some research. I know it sounds strange, I am just hoping they find something otherwise I will feel truly mad.

I really hope  that your procedure on 7th goes well and you have a speedy recovery xxx

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Hi Amy. 

I had a cystoscopy and they didn't find anything so I think I don't have intersitial cystitis, but maybe I have some endo on the outside of my bladder? I am setting up a list of the things I need to take to hospital, so I will keep a pillow and some comfy joggers on my list. I hadn't thought about that before - thanks!

My surgeon isn't an expert in excision, but he is only going in to diagnose, so I think I will have that conversation with him (and possibly change consultant) after the initial lap. I am not sure how easy it is to swap consultants in the UK but I think I need to check this out so I am prepared to make the move once I have my diagnosis. 

Thanks for the tip about ice packs too! 

I am so sorry to hear about what you have been through. This disease is really awful. I hope that there is more research and progress in the treatments soon. 

All the best xxx

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I am worried that they won't find anything and it will all be a big waste of time. My doctor is so sure that she will find endometriosis when she goes in that she is going to do an excision that day. Your symptoms are on the more severe side. I'm positive that they will see endometriosis when they go in. Especially with the bathroom issues that you are having. Having the pain constantly, with painful bowel movements, and painful sex makes it so much worse because you can never get away from the pain. It's isolating even in my marriage. I totally get feeling depressed and exhausted. I'm actually excited for my surgery even though I'm nervous about it. Nancy's Nook has a list of specialists where you can find one in your area. It sucks that it takes women so many years to figure out that the pain is not normal and to stand up for themselves. I'm sure you can talk to your doctor about doing an excision. I told mine that I didn't want ablasion and she was fine with that. You have more say in what's happening than you probably think. Good luck with everything. You're definitely on the right path.

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I am worried that they won't find anything too - but I think that we are bound to be worried. I had ear surgery a few years back and I had convinced myself there was nothing wrong with me. They ended up finding one of the biggest masses they had ever seen in the Western world! My point is that we can't know but I think it sounds very likely. But your difficulties aren't down to nothing and they will find it and help us with the problems. Let me know how you get on or message me if you need to chat about anything x

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Hi Bex

From what you have said I am 99% convinced you have endometriosis. Very similar to my symptoms from an early age..heavy periods blood clots...my mum having to pick me up from school every month. Hot water bottle and painkillers...I couldn't have kids...tò much damage it was in my bowel had to have double resection.by the sound of your bowel movement's it could also be in your bowel.the laparoscopy is the only way to tell. If you get definitive diagnosis they will offer you some treatment..there is no cure.but you know what it is and can deal with it. I had hystorectomy in 2002 total abdo plus double bowel resection...removal of appendix...and it's come back! 16 years later...I've been in agony for 3 weeks and also have a kidney infection..I had no idea it could come back..and how after all this time..this disease doesn't ever go..I have it attached to sigmoid bowel found via mri.its only because it's golf ball sized that it showed up. Normally u can only tell by laparoscopy..we now think it's attached to various organs and bleeding causing extreme pain and period type bleeding...for 1st time in 16 years...please get sorted..this doesn't go away.its blighted my life since I was 14...don't be scared to ask questions.. I'm about to start 6 months of zoladex injections...there are things they can do for you...good luck.

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Shades of 1981: from being on this site for several years i thought no one did just look-see laps any more. And there are very good reasons not to. Every time they cut you open you're at risk. We minimize this because we all go through it, but it's there. Just as important are the adhesions that grow on the inside after & at each incision. There is at least some evidence of endo growing in the scar tissue, or adhesions, on some women.

To do 2 surgeries where 1 could suffice is nuts. I know how much you're depending on having this lap, but please think about having a conversation about switching now to a specialist who would diagnose & excise in a single lap.

Yes, it sure sounds like endo & like it's on your bowels. Do yourself a favor and stop googling. You've done it enough & will only drive yourself nuts. Go to the support sites like this one, we're always here, but say goodbye to Dr. Quack Quack Google.

Your need for a diagnosis is normal, nothing wrong with you on that score. I couldn't have gone so many years, just not tough enough.

Take care. I do hope it all goes well, and soon.

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Gosh, Amanda, I am so sorry you have been through so much. This disease is so prevalent and it's horrible how little people know about it. I really hope that the zoladex works to help you sort this out. Sending my best wishes. x

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You are definitely right about stopping Googling. I had myself convinced it was Crohn's and then Celiac and I probably know as much about those as most GPs now but it didn't help. I am really glad I ended up here with such lovely people to give advice and support me. 

How do you go about finding an endo specialist? I didn't have a choice of gynecologists and I am a bit in the dark about the process. My current gyecologist didn't really want to talk about options, this was all said in a very matter of fact way so I presumed it was the norm. Now I am wondering if I should try to change sooner rather than after the lap?...

Many thanks for your advice, 

Bex 

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One of the other posters suggested some places to look for a specialist and i would try those right away. I live in Texas so am no use to you in that department.

Just because your doc doesn't want to talk in depth about this doesn't mean that you have to accept it. It's your body & you have control of it, not him. Demand answers, but do it nicely. And he has to answer the question about why 2 laparoscopies when you tell him you know that that means double risk, double the adhesions from incisions, and double your future oribkems from adhesions.

I've had 5 abdominal surgeries, only 3 of which are directly from endo. My abdomen is a mass of adhesions. Surgeons have to plan very carefully where to make their cuts whenever they want to go in there now. He needs a good reason for me to accept the validity of 2 surgeries.

My wild guess is that he doesn't know how to excise or oblate but wants the procedure fee (or points). That or he's no good at it & knows that but still wants the fee or the system "points."

The GI doc will have tested you for celiac & ruled out Crohn's & ulcerative colitis. Those are all common guesses along w/IBS when someone has the chronic bowel issues. For some reason gynos are so reluctant to think about endo so they dump their patients onto GI docs, who are too often the 1st to say endo. Very irksome & time wasting but also lets more docs earn their fees. Given the length of time it can take to see docs or specialists, that means that if we Google every disease under the sun, we sit a long time with terrible fears before we even mert a doc. And there are big mistakes in Google. One in particular is about a lung disease which Google says is less dangerous than looking at a wall for 5 seconds from 15 feet away. So wrong, it's a DX which instantly takes years off your life & which must be monitored. Avoiding google on health stuff gives a much happier life IMO.

Good luck.