HELP!Endometriosis and PCOS!

[avelvetcrowbar]

Hi there!

I'm a 23 year old who suffers with both Endometriosis and Polycystic ovarian syndrome. I've had 2 laparoscopies so far to diagnose my PCOS in my teens and also remove endometriosis (feb/march 2014).

My main symptoms that I have the most problems with, is my depression (currently on fluxotine, have been for a year and a half now, although ive been on various ones since i was 14)

Since my last laparoscopy last year my symptoms have been gradually getting worse. I have chronic pelvic pain most days, I have dysmenorrhea( excrutiating period pain), menorrhagia (severe blood loss) and constant fatigue and depression. Since my symptoms have been getting worse I was hospitalised just before christmas with heavy clotting and bleeding and incredible pain. I was admitted for a few days with an IV and sent away with a diagnosis of an endometriosis flare-up.

I have severe problems with my bladder and have done now for over a year, especially since my surgery. I can barely hold my bladder, it's painful, doesn't empty properly, i get sharp stabbing pains, a dull ache after emptying my bladder and have to pee constantly- and it hurts- and i mean really hurts, stings and burns, Ive been on so many anti-biotics, and some for months at a time, im currently on cefalexin or something similar but it is no responsive to anti-biotics or so it seems, and frankly i'm worried it could mean that endo has spread to my bladder? Has anyone had this happen? I've have been referred to urology and have my appointment on the 23rd of feb with a consultant- which will be followedup by a cystoscopy (a investigation of the bladder) Its also in the past six month started to hurt to have sex- not just deep pain but also pain on the entrance which gets so irritated and sore most of the time no matter what i do, it's impossible. I ruled out all STI'S and such at my local clinic so its nothing related to my sexual health. I was wondering if anyone else has similar problems? I am constantly bloated, in pain, and so horrifically tired that i'm napping most days and still feel drained. I'm just absolutely at my wits end. I'm going to be asked to referred back to gynecology/ist to talk about my symptoms getting so much worse and maybe another surgery as I cannot continue living like this. I suffer so much with pain in my ovaries and chronice pelvic pain but Ive also started having intense cramps in my legs and also phantom like period pains that hurt so much. Has anyone had the same? I keep googling symptoms and cant seem to find much help. I feel as if Im going mad and my friends and family just cant understand whats it's really like. I'm totally new to forums and such and would just love any input or advice, I really would.

Thanks for listening,

Jordan-Melissa.

x

[Wendy0493]

Hi Jordan-Melissa, it sounds awful the debilitating pain you have been going through and are in. I relate completely. This is the problem with endometriosis and the inflammation it causes, it doesn't just affect the womb but all the organs surrounding it including the bladder. It sounds like the pain could also be due to abdominal adhesions too which may have wrapped themselves around your ovaries and pelvic wall. Thats what happened to me after my surgeries. You are not alone even though the pain is hard to describe to people who know nothing about it. Apart from surgery what else have you been able to try?

[avelvetcrowbar in reply to Wendy0493]

Hello! Thankyou for replying to me-I really appreciate it. Its a small comfort to know i'm not the only person who feels it. I'm so worried that everything has got worse- sometimes you just know deep down. Ive been putting off going back to a gynecologist because if i'm honest im pretty petrified- but i'm trying to sort out my bladder. ive had constant stomach cramps too- actually in my belly despite going to the doctor constantly-ive only been sent away with painkillers and buscapan which surprisingly has done nothing! I haven't been offered to try anything at all! They just removed what i had- which was around my left ovary and the back of my womb and told me to take the pill back to back for three months at a time- which i was doing- but my body continued to have the pain and full period bleeding so i just resumed to taking it as normal.

[Wendy0493 in reply to avelvetcrowbar]

Hi I know how upsetting and worrying it is when you are in so much pain and the pain killers do nothing. My over active imagination used to go wild. I had severe stage iv endometriosis and adenomyosis for 30 years, had countless operations, chocolate cysts, adhesions, etc and the most debilitating and chronic pain known. I paid thousands of pounds to 'specialists' for private operations from cystectomies, abdominal excisions and various operations but my symptoms just kept returning and latterly got worse. I reached a point 4 years ago when things got really bad so I did a nutritional diploma and psychotherapy diploma and researched the internet silly and spoke to other women who had cured themselves. I share this with you now to give you hope but I am now pain free and have no symptoms after curing myself through natural methods. I used to go to the gynaecologists and doctors and tell them of my improvements at various stages and encourage them to tell other women - but they just looked at me with condescending eyes and rolled them. So here is one major thing that made a difference to me although it took about 3 months to feel the impact; cutting out wheat flour from my diet and swapping it with rice flour or potatoe flour. Nowadays there are loads of great wheat and gluten free products in supermarkets (like Genius bread in UK) so you may want to try an exclusion of wheat for 3 months and see if that helps with the inflammation and pain. Its the fact that wheat was genetically modified in the 1970's which causes the 'estrogen dominance' problems. Its not a magic pill but it was one of a number things that worked for me. If you have any other questions let me know.

[Lamartin92]

Hey I'm 22 with severe endo and can relate to pretty much everything you have said! Although I've not had any problems with pain during sex yet, although I'm constantly bleeding ATM so that's kind of a kill joy for the other half. I've been put on zoladex for 6 months a temporary induced menopause to relieve my symptoms for a while whilst I make some pretty big decisions, whether to start trying to conceive or get rid of things.. i did a 3 month stint just before Christmas after my laparoscopy in sept. It was no fun but it did stop everything the bleeding the pain, except being 22 and menopausal was a crazy thing to deal with but I felt human again even just for a short 3 months so I'm looking forward to this next lot kicking in. Iv since been to the docs to ask for a 2nd opinion and am being referred to a specialist In endometriosis!! Sometimes you physically have to do your own research and ask for these things!! It's annoying!! Maybe you could ask for a referral for a 2nd opinion?! x

[avelvetcrowbar in reply to Lamartin92]

Thankyou for replying.

I'm glad im not the only one!

I didnt even know there were any specialist in the uk!

You would think that they would say something or suggest something like that?! since ive been diagnosed for over a year now with endo and bar numerous trips to a gynecologist, not alot has been done bar "continue to take the contraceptive pill"- hospitals only advice. I'm worried i'm going to be in the same boat too, its awful that we have to make these decisions at all-especially as were so young I hope you do manage to try to conceive if thats what you choose to do-and if not i hope that everything goes okay if you decide to have everything out. sometimes i think that would be easier-to have everything gone- but then i could be robbed of being a mother, which would suck- not that ive much hope with both pcos and endo. Im going to speak to my gp again and ask if there's any specialists that he can refer me to. I'm losing my mind with pain!

x

[Wendy0493 in reply to Lamartin92]

Hey, so sorry to hear about your pain and constant bleeding too at such a young age. You are wise to do your own research but unfortunately a specialist will be a surgeon and a surgeon likes to use a knife and operate; which unfortunately then causes adhesions and does not deal with the causes of inflammation and endometriosis. I suffered from severe endometriosis from the age of 11 years old and it all came to a head about 4 years ago when the surgeons were very keen to cut everything out! But my mother had severe endometriosis and had a hysterectomy. She was never the same afterwards and she was always saying to me "never trust doctors, they bury their mistakes". Her endometriosis came back despite having had her womb removed and worse, because there was no womb to separate the bladder from the bowel, she then had terrible ongoing infections and other issues (check out HERS Hysterectomy Education Resources and Services website in USA). I understand how horribly debilitating this endometriosis is but hang on to your womb. There is this misconception that once everything is 'out' all problems will be gone. But they won't - you will just swap them for others. I am lucky in that I found a way to naturally heal my endometriosis (and adenomyosis) and now want to be able to help other women do the same. Let me know if you need any other info or help.

[Hidden in reply to Lamartin92]

Hi lamartin I'm in the same boat as you. Hugs xxx

[Lamartin92]

I don't think your allowed to name particular places or doctors and not sure if you can send messages on here but will have a go. Unfortunately I was told I have very slim chances of ever conceiving naturally, but there's always that chance you have to keep hope. It's hard to think that something so natural may become a very clinical planned unnatural process. I find that the hardest part to get my head around sometimes. Unfortunately for me further surgery is not something I can avoid as I have a 10 endometrioma in my ovary which both are buried into the back of my womb and abit mangled. It was 15cms prior to my op but they were only able to drain it a little bit. It will eventually need removing.. Which is another reason why I asked to see a specialist because hopefully they could save more than a general gynea. I'd hope so anyways, it's always good to get another pair of eyes, brain and knowledge to have a look there's no harm in trying. Just want to use my 6 months on zoladex wisely. I came across a private doctor who does not believe in a hysterectomy as a cure, it's made me realise there's other ways of coping and treating endo, you just have to put your foot down because hospitals have targets and boxes to tick!! And I don't plan on being resolved with a hysterectomy I plan on getting proper treatment that will give me as good a chance at becoming a mother I'll try and find a way to message you privately about names and things I'd never wish this disease on anyone but it's nice to stumble across someone the same age!! I mean that in the nicest way possible lol xx

[Wendy0493]

It sounds like your insides are in a right tangle; no wonder you are in so much pain. I actually got the gynaecologist to take a video of the last endometrial excision although I am still trying to figure out how to upload on Youtube so others can see too! Its not until you see our insides that you suddenly have a whole lot more compassion for ourselves and why there is so much pain. I used to get the most awful big 'chocolate' cysts and I don't think the word 'pain' gives it any justice to the agony I endured. I have just created a Facebook page EndometriosisUK.org and on twitter if you want to contact me. I am no doctor but I retrained in nutrition and psychotherapy so I could understand what was going on for me, and I say this to give you hope, that despite 18 large cysts, crippling abdominal adhesions (after an operation to cut the old ones!) and adenomyosis, I was able to find a way to heal myself through natural methods. I am hoping in time I can create a pilot program to see if I can do the same for other women. To give you even more hope I was told countless times I would NEVER have children (I only had one ovary left and both fallopian tubes were damaged!) and I, by the grace of God, had 2 gorgeous children! Look after yourself. Best wishes xx

[Mabes]

What pill are you on? Are you on an endo friendly one?

Have you been considered for interstitial cystitis? Some women with endo have it. I have had a lot of bladder issues and pain because I had endo next to my bladder. It has gotten quite a lot better since I has it excised, but it still hurts randomly (particularly noticeable if it's hurting and I pee). I have the mirena coil to try to stop the endo spreading.

[avelvetcrowbar in reply to Mabes]

Hello! Thanks for replying! Ironically it's my bladder which has woken me up! 😊Not professionally, no but I did suggest it to my doctor that maybe in could be something similar if not that and that's why he's referred me to urology. I've had about 7 "water infections" and about 5 or 6 different antibiotics in about by months which is just not right. I'm just desperate to know where I stand with everything and know what's going on. Hopefully the cystoscopy will give me some answer's. I'm on the pill cp-cyprindol/dianette which I was put on years ago to help with my severe acne at the time and complications with PCOS and have no been suggested to change. I've found anyone I have spoken to at the hospital really unhelpful- I've had no suggestions of specific drugs or change of medication or seeing a specialist or anything. They just packed me off as soon as my second surgery was done. 😧 pretty frustrating. X

[Mabes in reply to avelvetcrowbar]

I am glad they are properly checking out your urinary issues. That's good.

I understand what you mean about being left after the surgery as that's my experience too. It's frustrating, and causes stress and worry if all the gynae symptoms are not resolved from the surgery.

Just a thought, but you could always ask for a referral to an endocrinologist regarding your PCOS and see if Dianette is still the right pill for you. The gynaes are not always good with PCOS I think - perhaps because it is so hormone based.

On a side note, I was on Dianette for 10 years and when a new GP I saw once found out, he muttered that I shouldn't have been on it that long! (I was like WTF what's that mean?! Lol... I still don't know).

[avelvetcrowbar in reply to Mabes]

Thank you! Ive got a doctor's appointment booked this Friday with my gp so I'm going to bring up everything that I want to say really and ask about getting either referred back or referred to a specialist. I've drastically put on about 2 stone in the space of a year which is not normal considering my eating and exercise habits haven't really changed so I'm worried it's hormonal and want to get that investigated too!!

I've been on dianette for 9 years so far?! With no suggestion of changing or anything of the sort! Dreading next Mondayso urology but desperate to find outhe what is going wrong! I just feel like there are virtually no answers for any questions that I ask anyone medically. Thank you for the advice though and hope that you are well! 😊

[Mabes in reply to avelvetcrowbar]

Oh that's good! I hope it goes well. Let us know.

Regarding Dianette - have a Google and see... Perhaps there is something written about how long one should be on it before switching to another option. I don't know if that particular GP knew something I didn't or if he was just expressing his own opinion.

Join Thyroid UK (they're on here) and get reading! With your weight gain, I'd definitely get your thyroid checked, but bear in mind the NHS have one idea if what's optimal, and it doesn't necessarily mean it is optimal for each of us. TUK can also help with other hormones. Make sure to get a printout of all your blood test results (for your records).

Xx