Recently diagnosed with Endo and an obliterated pouch of Douglas, any advise? Thanks

[Clairabelle1988]

Has anyone got any advise for me, I’ve just been told I’ve got endo after 10 yrs of fighting for answers and have an obliterated pouch of Douglas. My ovaries do not move either and I get ovarian cysts frequently. What treatment has helped? Have you had to have surgery? I’ve only been offered the coil and inducing menopause. What did you do next after diagnosis? Thanks

[Lindle]

You have just been offered the coil by a consultant in the UK? An obliterated POD is severe stage 4 endo. The coil isn't a treatment unless your symptoms are mainly uterus related. Surgical treatment is complex and is based on pain and/or desire to conceive. It must only be done in a specialist endo centre in tertiary care and you should have immediately been referred as soon as it was discovered. Where are you in the UK?

[Clairabelle1988 in reply to Lindle]

Hi thanks for responding. I live in central London. I’ve been in and out of A&E for 2 yrs and they were saying my scans were fine, that it’s in my head. Waited 4 months for a referral to another hospital and within minutes she spotted the endo and obliterated POD. She wanted me to get the coil straight away and review in 6 months but I’m concerned about the coil. Also I don’t see how masking he pain (if it does) will help since my uterus is fine and the endo is in my pouch and bowel. Maybe she thought for the ovarian cysts? I came off the pill in 2019 cuz my periods were worse than ever and still got cysts ever other month. My gp/nurse told me to stay away from contraception. Also mentally they really don’t work with me. My older sis has stage 4 endo around her uterus, ovaries and had to have her appendix out. She lives in Australia and says the 2 options I’ve been given are awful and I’m going to find another opinion. Came on here to see if anyone could recommend a particular clinic or type of specialist because I’m very concerned and in pain most of the time. It’s been 10 yrs in total were I’ve felt ill but the last two I’ve really fought for answers and been turned away.

[Clairabelle1988 in reply to Clairabelle1988]

Sorry forgot to mention the specialist said my ovaries are immobile which suggests endo too. The right one hurts/aches most of the time. At the moment even at 32 im more concerned with just feeling human again rather than having children. I don’t want to keep having surgeries, feeling ill and not in control of my health while raising children. I’m coming to terms with that now.

[Lindle in reply to Clairabelle1988]

It is a legal requirement that you are referred to a tertiary endo centre working to BSGE standards. I just don't understand why they aren't doing this as a matter of course. The list of centres is below. You aren't allowed to ask for feedback on here for particular centres.

bsge.org.uk/centre/

[Clairabelle1988 in reply to Lindle]

Brilliant thank you for your guidance. I feel like all the medical teams I’ve spoken to have left me on my own. Really it’s been my sis due to her experiences and my parents who have tried to help but don’t know what to do next. I’ll take a look at the link. Thanks again!

[Noodle1984]

I’m so sorry you’re going through all of this. It isn’t easy. I am 36 and was just diagnosed in February with stage 4 recto vaginal endometriosis. I have had painful periods for as long as I can remember. I even remember being a teenager (17 or 18) and when I went to emergency they gave me a pregnancy test and that was it. So I asked my doctor and she said painful periods were normal. And so began the journey of misinformation from doctors. I asked my GP about endometriosis around 6 years ago, this was after a miscarriage and continuously trying for a year to have a baby and not getting pregnant, and she laughed at me and asked what would make you think that. I also at that time was having 7-8 bowel movements a day and on my period every bowel movement I would get a sharp knife hot poker up my rectum (sorry tmi). I say this because I have a high pain tolerance so I just thought it was normal. But my surgery was horrible and hard to recover from, I almost ended up with an colostomy bag. It took 3 hours for them to remove my rectum that was pulled up and over my vagina. My ovaries were also not free moving but that was a small amount of work for them.

I also have 16 other chronic conditions including adenomyosis and fibroids. I say this because I have done a ton of research on my conditions and anything along the way I thought might also be going on lol.

Everyone hates this and wants a “natural” way but Endo isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain (creates too much scar tissue). This is also one way to preserve fertility if that is something you want. Endo feeds on estrogen, the more you have the more your Endo grows.

There are a few things you can do for yourself now..

1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.

2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.

3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.

4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.

5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.

6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition. They tend to only do ablation (basically removing them top and leave the root). Instead of the gold standard of excision where they remove the whole implant. I have read so many stories of woman either coming out and they find no Endo or are still in just as much pain.

Sorry about the novel! Please feel free to pm me if you have any questions. You got this! Just keep hanging in there. 💕

[Clairabelle1988 in reply to Noodle1984]

So sorry you’ve gone through all this, can’t believe how that doctor reacted to you, sadly it seems to be common. The exact same thing happens to me at A&E, take bloods, pregnancy test, give me some morphine and send me on my way in tears normally. So glad you’ve finally got your diagnosis. You sound so brave and all your info has been so helpful. My symptoms sound very similar to you when it comes to the pain and bowel movements. Been like that really since I was about 11/12 yrs old and just got worse through my 20s and I’m now 32. Penetration over the past two years has got more and more uncomfortable and the next day I can be in a lot of pain with deep cramping. But like you said, we just battle through and say we’ve got high pain tolerance and ‘deal with it.’ Not right and I will definitely look into a pelvic/endo physio, think that would be really helpful. I’ve already been gluten free for 9 yrs and have recently cut out dairy, because of the tiredness I’m struggling to cut out sugar but will keep trying to. Didn’t know that about soya so will keep that in mind when I’m shopping. Thanks again and take care, I hope things improve for you, best of luck and I’ll keep posting with updates and questions.

[Noodle1984 in reply to Clairabelle1988]

If you’re wary about taking hormone therapy I would highly recommend you do a test called the DUTCH test. It’s a dried urine sample that you take 5 over the course of 24 hours during a specific time in the month. It will show what your hormones do over a day and give you a better idea of what kind of hormones you’re producing. It will also tell you if you’re producing too much oestrogen, which is typically higher in Endo patients and is the cancer causing hormone. I just did the test recently and found out all my hormones are tanked. It tests your sex hormones and adrenal hormones. They can affect your sex hormones as well.

For your tiredness, try and get some blood drawn to test for anemia or thyroid issues. Your adrenals can also affect this. I have severe adrenal insufficiency and severe anemia (I am waiting to get an infusion in the new year).