Rectovaginal endometriosis

[griffij9]

Does anyone know if rectovaginal endometriosis is the same thing as bowel endometriosis?

[Hidden]

No. Rectovaginal is exactly that- rectovaginal. Pouch of Douglas, the space between vagina/uterus and rectum. I have mine there as well, hurts like hell if I have constipation. Also uterosacral ligaments can be affected too, mine are, hurts when walking. The endo can migrate around in and outside the rectum and the patient may need further surgery with a general surgeon present for possible removal of parts of the rectum if it is too affected. Bowel endo is on your small and/or big intestines. Depending on the case the patient may need parts of the bowels removed. You can also have both of those - rectovaginal and bowel, then the case would be much more complicated and surgery will be hard and long.

Why are you asking?What happened?

[griffij9 in reply to Hidden]

Thank you for your reply. My gynecologist wasn't very good when giving me my results. I seen she wrote the word rectovaginal endometriosis down on my notes and I had to ask her what it was and she was really rude. She said 'you know what your vagina is yes? And you know what your rectum is yes? Well it's the wall between the two' I was to embarrassed to ask anything else to be honest. She hasn't really given me much information so I am looking into things myself. She said that surgery would be risky (I also have endometriosis on my urethra) So she's given me three options 1 contraception 2 a drug that puts you into the menopause or 3 surgery which would be risky and they wouldn't necessarily be able to remove it all or something. Thanks for your help ☺

[Hidden in reply to griffij9]

Ah, darling, so sorry!

Ok, please, please change the doc!!!!Do not go there anymore, press the gp to send you to someone else, if NHS refuses - make a complain! She should make you feel safe and understood, not humiliate and belittle you!

I don't know where you are, but maybe you can search on this website:

bsge.org.uk/centre/

for a center near you and insist to your gp to be send there. If your gp is being cheeky , change the surgery (this is what I did!).

If it was me, I would do the surgery, but with a person I trully believe and trust in, not this c*nt that was so rude!!!Ah, wish I was with you - I love putting people like that in their place! Because even if they don't clean all of the endo, believe me you will feel much better and then you can try the hormone therapy and will work better due to the fact that the endo will be less.

My biggest worry would be the urethra business - very very tricky and risky. Again, do a research, google all the docs, read reviews!

xx

[Hidden in reply to Hidden]

p.s. do not agree to option number 2 (it is a shot, they call it depo) under any circumstances!!!!only horror stories from women who tried it. in america they use this shot to chemically castrate sexual offeneders!the side effects are really horrendous, putting your body in pre-mature menopause can cause osteoporosis (and this will be the least of your problems), just youtube "hormonal shots/depo provera honest reviews" and you gonna see what am I talking about, there was even a twitter page.

[dixxx in reply to Hidden]

Decapeptyl is the name of the treatment depo is the contraceptive jag x

[Hidden in reply to dixxx]

Cheers!

[Plew in reply to Hidden]

Coming from North America and moving here I do have to say that is only Alabama that recently passed this bill and everyone in America knows it won't stick as other states have tried this and it never passes ethics. So just to keep this forum clear and positive please do your research and don't make all of America look a horrendous place when every country has their downfalls, ie the UK and NHS, considering what so many other countries health care systems being amazing. And America has leading endometriosis specialists! And their work makes its way over to Europe to be used! So thank you America for taking endometriosis seriously!

Just saying. Typically this forum has so many negative experiences and issues in it so let's keep it positive wherever else we can!

[Hidden in reply to Plew]

Wow, ok, sory for offending America then!You don't have to take it so personally, I think. I was just repeating what American friends/acquaintances had told me...

[Plew in reply to Hidden]

I didn't take it personally, just keeping the facts clear for everyone to have the correct information when making decisions about their health. People need to have clear, unbiased facts when doing research. That aspect of the drug use is 100% unrelated to endometriosis and is uncalled for in this forum, that's all! Don't take it personally either!

[griffij9 in reply to Hidden]

I am tempted to ask if I could see someone else. She told me she doesn't know much about endometriosis and she wasn't the lady that did my laparoscopy. I had an internal ultrasound scan a few weeks after the laparoscopy and the nurse told me she could see adhesions (which were also seen on laparoscopy) and she said my ovary was stuck. I told the consultant that and she said it's not possible as it was free during the laparoscopy. I felt like she was keeping my results all hidden and that I was annoying her. My dad works in theatre and knows the lady that operated on me so I may ask him for her name and maybe request to see her. She really put me off surfer saying I could end up having other organs damaged etc. It's just frustrating. I'm definitely going to look into a endometriosis specialist. Thank you for your advice xx

[Hidden in reply to griffij9]

Ask the hospital for your medical records! That is what I did! I had a terrible experience with my first lap, they stroke an artery in my tummy and I bled and bled and bled ....for 3 hours!Nobody called a vascular surgeon even though they were warned that I have a clotting problem...argggg still angry thinking about it!So I filled out an application form on the reception in the hospital and they send me the full medical records six weeks later, even though it was supposed to be within 3 weeks. I had to call them everyday at some point and press them. It was stressful, right before moving away! I have them now, but conveniently what exactly happened in the OT is not recorded. However, I have all the pictures they took from the inside and also letteres with diagnose (the endo the remove has to be send to a lab and after you will receive a pathology report that yes, those are endo patches). Did you receive any letter from the surgeon at all? My advice is go to the hospital and ask for your medical records. They should have also send those to your gp as well, you can ask the surgery for a copy of your medical history.

[griffij9 in reply to Hidden]

I've seen a lot of negative reviews about option 2 and to be honest I don't think I would ever consider it. I have enquired with the hospital on how to get my records but I was put off by the fact that the consultant has to give permission. I think I'll ring my gp tomorrow and see there first. I didn't receive any results or anything from any of my tests which I thought was a little odd. The surgeon just came and had a chat with me and showed me the images but she wasn't my actual gynecologist. Sounds like you went through a tough time! Glad you are ok now x

[Hidden in reply to griffij9]

No, not ok,supposed to have a 2d lap next week, will lose one of my ovaries, but this time doing it in Germany with an endo specialist I actually trust....

If the hospital is NHS, the consultant can't say no. Basically by law you are entitled to access your records.

nhs.uk/using-the-nhs/about-...

Ask your gp first. I think I asked mine and he send me to the hospital to fill the form. But nobody has the right to deny you, push them (it is odd you didn't receive any letters from the surgeon though)

xx

[griffij9 in reply to Hidden]

I thought it was odd too. Oh gosh, sorry to hear that. Do you live in Germany? Hopefully it will work for you. Fingers crossed 🤞🏻

[Hidden in reply to griffij9]

Yes I am in Germany, moved half a year ago, miss England though

Hope you will be able to get some answers too!

xx

[HeIsMyBeau in reply to griffij9]

Change doctors mate, you need a supportive up to date specialist. I have had surgery for exactly the same problems (mine was wrapped around urethra and rectum plus bound to the wrong areas by endo spider web) which really helped. Having Progesterone post surgery also helped

I agree 100% with Mildred_pierce

[dixxx]

Menopause treatment won’t help if it’s already hurting when constipated and u can only be on that treatment for 6mths or if ur doc decides otherwise x

[Alita88 in reply to dixxx]

Exactly, that's what happens to me and I had surgery.

[EndoZee]

I agree - change your Dr! I had the same issue, I had to find a specialist on my own who gave a damn. My life is so much better now!

Good luck

[Alita88]

I had both, bowel and recto-vaginal oh and also on my vagina another node. The biggest was on the recto-vagina area. Got it all excised. I wanted to die the pain was mostly on my "butt area" spread to my lower back and legs. There were moments I didn't know what position to be on as everything hurt. I bled a little bit from behind the day before my period. I would go to the toilet like 20 times a day, mostly clear mucus that hurt a lot to get out. Sorry tmi but endometriosis is horrible and the recto-vaginal node was the worst. I tried hormonal treatment but it didn't work as it was getting bigger and I risked having an obstruction. Was on menopause treatment for 6 months but the side effects are the worst. So surgery was the best option for me. What a horrible and condescending doctor! One feels dumb and hurt with docs like this, they should be ashamed of having chosen that profession.

[HeIsMyBeau in reply to Alita88]

First time I have read someone experiencing the same pain/issues closest to me. Im so sorry you had to go through that

[Alita88 in reply to HeIsMyBeau]

Thanks! At the end it was like 3 horrible weeks every month. Funny how the body gets "used" to being in pain and you go on with your life but you're not yourself, you're shattered inside and your nervous system is about to break down any minute. Now I'm 2 months after excision surgery (7 hour surgery!) , temporary stoma and keeping my hopes up it will never return that bad. I hope you got your treatment all right

[HeIsMyBeau in reply to Alita88]

As hard as it sounds please try to be patient. I didn't see any lessening in pain til 5 months post surgery. I have then had 8 months with relatively easy pain management. An absolute blessing for a change.

[Barcelona88]

Hi, I have this and I had it all removed in May. Make sure you are seen by a BSGE centre, I’m under UCLH and they have been great. My bowel was stuck to my womb, my left ovary was stuck down and it was all over my uterosacral ligaments and my left kidney, basically my left hand side was a mess. I’m now 9 weeks post op and feeling like myself again and no longer in constant pain. It’s been a long journey to get here, but worth it. Sadly we have to fight for the right treatment, nothing is made easy in the world of endometriosis.

[Reggiefelix17 in reply to Barcelona88]

Hi can I ask was your first period terrible ? Mine is out of this world painful and the blood well I’ve never had periods like this ?

Sorry to jump on the thread xx

[Barcelona88 in reply to Reggiefelix17]

No, it was ok. I’m now taking pill continually. Sorry to hear this, you should speak your doctors or specialist nurses. xx

[Reggiefelix17 in reply to Barcelona88]

Yeah I wasn’t put on the pill as I want to try for kids , waiting for a call back from my endo nurse thanks for replying x

[Barcelona88 in reply to Reggiefelix17]

Make sure you take it easy, I did more than I should and it set me back. I’m 9 weeks post op now and I’m only now feeling like I’ve just about recovered. X

[Reggiefelix17 in reply to Barcelona88]

Sounds just like me I’m 4 weeks post op tomorrow ans I’ve been doing a lot the last week then my period hit me yesterday like a ton of bricks , thanks I know I need to rest xxx

[HeIsMyBeau in reply to Barcelona88]

I had the same surgery issues however its been 4 months since surgery and I can confidently say the pain has changed but now slightly worse. I had no idea so many other women are at this level as I. I have just moved over from Australia and trying to research support

[Reggiefelix17]

I have this too ans just had my op I had my womb stuck to my bowel very deep luckily I had a very deep shave instead of bowel surgery I had to have two specialist in with me , I’m 4 weeks post op

Recovering ok just long road

Hope you get to be seen by the right people I’m

Under a endo specialist xxx

[pashawillis]

There is lots of info on Nancy Nook Facebook page.. With list of specially trained surgeons.. Do research as much as you can..

[Anne3242]

Hi everybody,

I have the same problem.Have bleeding from the rectum every time I have a period.Had a laproscopy in Oct 2017 with Grade 2 endo in the form of a cyst on the top of my cervix.It never cured the problem at all.The endo hadnt gone anywhere else.Then my doctor suggested a colonoscopy.All clear.I got pregnant in Feb 2018 and my little boy was born in Nov 2018.The bleeding is back full and strong ever since.Nobody can give me any solution at all.

[Alita88 in reply to Anne3242]

I'm sorry. But congrats on the best gift of all! One question, if you were bleeding from behind (I was too) did the cut the rectum? What did they do? Ablation or excision?

[Anne3242]

I hadnt surgery at all.The problem still exsists.The lap made no diff at all

[KimJL]

I have been diagnosed with Adenomyosis and suspected Endo. I had one adhesion behind uterus found during my 1st myomectomy in 2005 (I was 28 at the time), the biopsy from this surgery led to my diagnosis with Adeno. But MRI, colonoscopy and ultrasounds have not indicated any other adhesion or irregularities since then. I however do have several symptoms of Rectovaginal Endo such as irritable bowels (constipation and diarrhea), intense stomach pain, fluid retention & extreme bloating, but no definite diagnosis, only guessing "oh it may be Endo or issues from the enlarged uterus". The pain usually responds to heat and painkillers, so I use a hot water bottle and take voltaren suppositories, buscopan plus (oral) & olfen (oral), I get a shot of the last two if things get really unbearable from the doc. Also close to and during period time,I tend to lessen or eliminate the little dairy that I consume, also no spicy foods or eggs or chicken or anything that will irritate my bowels. Fish,pork, beef, lamb is ok for me and I try to follow low FODMAP diet as much as possible ( recommended by my gastroenterologist).

I am due for a hysterectomy, which I have been requesting for years, but in Trinidad and Tobago, where I live, the doctors believe it is unethical to perform a hysterectomy on women of childbearing age with no children. I have no kids, IVF treatment was not recommended for me based on age, previous surgery, inability to take hormonal meds so. I am 42 & have been unable to work for the past decade, and tired of the endless cycle of pain, bleeding, ibs, recovery , then do it again next month. For those who are interested, Traditional Chinese Medicine (TCM) has helped me with many of the symptoms I have had over the decades of dealing with these conditions as I cannot take any hormonal meds since 2010. The TCM does not cure the condition though, so, surgery it is. For everyone in this thread, I want to tell you that you are doing your best, I do hope you get some good treatment and good luck.