I had a diagnostic Lap on 8th November. Diagnosed with peritoneal endo accross both sides.
Started cerelle at the beginning of December. I had only just stopped bleeding after my op and the mini pill made me continuously bleed until 3 weeks ago. (I’ve been given iron tablets).
As soon as I stopped bleeding I’ve had period pains again for the last 3 weeks. I can live with that. The symptoms I struggle with are fatigue and constantly getting sore throats and ulcers from being run down. Upset stomach, pain when weeing and headaches too.
These things are stopping me work because I can’t go a week without being really pretty poorly. I’m feeling really down and very worried about my future. I can’t have a fully functioning life as I am.
Im also getting ill after sex. Oddly when I was constantly bleeding it wasn’t as bad, but now I’m not Im poorly for a couple of days after. Pain when urinating, off my food, pelvic pain.
I don’t have a gynaecologist because they found endo and discharged me like it was nothing. No treatment. My GP is doing all they can to help and referred me somewhere else. There will be a long wait though.
Xx
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iLoveMyTortoise
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It sounds like you're having a really tough time of it at the moment. It's hard enough dealing with the pain, let alone all the other symptoms too. I'm not sure if you've seen our 'treatment guide', but it's a really comprehensive document that outlines a number of options with regards to pain relief, including a number of complementary therapies that can help reduce stress (which can make pain even worse). You can download this at endometriosis-uk.org/endome...
Please do reach out whenever you need to - we have a fantastic helpline (0808 808 2227) that is manned most days by volunteers who all have personal experience of endometriosis. You can find the times that it is open here: endometriosis-uk.org/helpline
There's also an excellent book that you might want to take a look at - Endometriosis - A Key to Healing and Fertility through Nutrition by Dian Shepperson Mills & Michael Vernon. The right eating habits can really help to boost your immune system and could help to minimise some of your other health issues. Nothing is going to be a 'quick fix' and everyone is different, but it's packed full of information - hopefully you find it useful. In addition, I know it sounds like such a little thing, but if you're not already doing so, then drinking a glass of water when you wake and then sipping water throughout the day could even help minimise fatigue and headaches.
It's good to hear that your GP is supportive and has given you a referral - fingers crossed you're not waiting too long for it.
Yes two top surgeons misdiagnosed me after both surgeries. So the gyno misdiagnosed you. Pain after sex is why I doubled my estrogen (estradiol) and sex was great and my endometriosis came roaring back . Great. Yesterday I went to a dr who listened.
I’m going to a gyno soon. Armed with stuff to say to her. Please demand what is hurting is not NOTHING. Please demand that you ask for a surgeon who is more informed about endometriosis and how to prevent the roots growing back. I should say in general ……..she needs to F———k acknowledge that you have it and open up new classes that drs need to take . Uh. I feel for you. I was sent home so many times and told it was nothing .call their office where you went and tell them about this site and that it includes drs. With endometriosis. It makes me so upset what you wrote I want to call for you and ball them out .. the doctor . Tell her to brush up on her skills.
Sent home with nothing ????? It may be you may need a laparoscopic look which is the only way to detect it. Also that pelvic pain I had …..they told me to take it easy and drink cranberry juice . It’s probably a low grade UTI. 👿
I had a laparoscopy already and they found endometriosis on both sides of the peritoneum. The Surgeon/my consultant just didn’t care basically and discharged me. I’m making a complaint about it as there was also other aspects of my treatment Im not happy with.
I’ve been having pain after sex and pain when urinating for about 10 years now. I always test negative for a UTI and thrush etc. no antibiotics or antifungals have ever helped. I think it is definitely a symptom of my endometriosis.
My oestrogen levels were extremely high so I’m on the mini pill to reduce them. Even though my oestrogen levels are now closer to normal, the mini pill has not yet helped any of my endometriosis symptoms so I’m hoping to try a different brand or different treatment altogether.
Hope you get the help you need for your symptoms xx
Well you for sure have endometriosis. They should have talked to you about estrogen. It is like watering a garden . I can’t believe this . I’ve had this 40 years and pushed out the door like you after two surgeries so far. WTF. No one ever told me about roots .. it didn’t occur to me to ask or was it that they shoved me out of the door after removing ovaries and not any advice on anything . After taking all female parts out. And scraping the rest of things in me. Yesterday I saw a dr who listened to me . Every time she said well maybe …..dah dah dah or bla bla bla I said listen . I’m here for one reason . I have endometriosis and I have terrible kidney pain. So she’s ordering ultrasounds for kidneys . She already said it doesn’t show so I said well dr I’m not stopping til it’s gone so I guess that will mean a third surgery /and I will continue……no estrogen, and no foods that cause inflammation .
It can lie (sp) dormant . Mine has done that for a few years . Ok I could go on and on. I don’t know what ti say except do t stop until someone listens . Meaning a gynecologist I guess. Someone will catch hell if I get sent home from one more dr who said your images don’t show anything . Duh. So find it. I have endometriosis. Fix it. Learn modern medicine you freakshows . Go to school as drs to learn the most modern things ti do …….it’s very hard to detect and yes there is pain after surgery ……but again……I have finally found how to make it lie dormant. It’s mainly just my kidney area now/. When I dumped my estrogen down the toilet ……and stopped taking any estrogen and several things like cafine and nuts . I feel like I’m repeating myself in shares and reply’s …..
Sorry you’re struggling with pain for so long. And sorry they can’t just take your word for it and be as thorough as they need to be. Trust me I understand. I have two other serious chronic conditions I was sent away for years with too. I eventually made official complaints both times. I’m not impressed that I now have to struggle again for a 3rd time.
I don’t know whether you’re being seen on the NHS or not but whenever I don’t feel listened to, I find someone good and see them privately for a one off consultation. I always feel it’s a better more thorough experience. I explain I can’t afford to be treated privately so have them refer me back to NHS for any tests or treatment.
I do believe however I have had low grade uti ‘s . A few after surgeries. Cranberry juice does help actually. And Another thing would be antibiotics. ? I don’t know. But I yelled at the poor person who answers the phone line . I stopped doing that long ago. Just calmly told them I am planning my suicide so please ask the dr to call me back . After reading a dr book on latest info about endometriosis.
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How long after surgery does it take to see an improvement? 
just wondering what you tell people when they ask whats wrong
When will the bleeding end?
When can you see an endo specialist
Anyone else experience no improvement with decapeptyl?
