I've been doing ok for a while since coming off the pill but recently things are getting worse again. The vulval itching has got so bad its waking me up scratching myself raw, and I've got loads of lumps that I assume are some sort of cycst or ingrown hair. I've got stabbing pains under my bellybutton and above my pubic bone that hurt pretty much constantly and pelvic pressure when I'm sitting. I said enough is enough and booked a GP appointment for Monday but I don't have high hopes as they keep trying to get me to go back on the pill or implant which I really don't want to do as I wasted 4 years of my life feeling awful on hormones and still having all the same symptoms. I was offered a lap but privately, but said no due to money and wanting to start a family soon, but I have no idea what to do next!
Symptoms again: I've been doing ok for a... - Endometriosis UK
Symptoms again
The laparoscopy is almost going to be necessary if you want to conceive naturally.
There are many very skilled and experienced excision surgeons working within the NHS and if you contact me I can give you the list of the best and most well-trained ones with experience with stage 4/deep-infiltrating endo.
The GP did not receive the training to be able to help you. No one in med school receives endo-specific training. The GP won't be able to help you, but will be able to refer you to one of the surgeons to then discuss the possibility of a lap.
Itching in the vulva can be a sign of bacterial vaginosis. When is the last time you have received a vaginal swab? What were the results?
An upset gut can disrupt the bacteria in the vagina and thus cause it so I suggest you also look into a plant-based, paleo AIP diet (This post has been edited in line with Endometriosis UK's code of conduct] so lots of fish, veggies, some pasture-raised eggs, some nuts and fruit, some wholegrains if you can tolerate them. Drink lots of water. No cured meats, alcohol, smoke, dairy, soy, coffee, desserts, refined carbs, processed and fried foods.
Use extra virgin olive oil, salt, pepper, turmeric, parsley, coconut oil, lime or lemon juice to cook and as dressings. Sleep plenty. Do some light yoga, swimming or walking outdoors everyday. Try Epsom salt baths and CBD oil for pain.
Get your vitamin D levels checked out ASAP (the GP can prescribe the blood work)
Thanks for the reply! I had a lap just under 2 years ago and nothing was found, which was frustrating as I'd protested for years for one and after that no doctors were bothered about seeing me! After it I chose to come off the pill and was discouraged, which I didn't get as if there was no endo, why would they want me on it? I had my lap at Birmingham Womens hospital as I was told they're a good place for endo, how do I find out if my surgeon was a specialist or not?
I haven't had any swabs really but I was told back when I was on the pill I had vulval dermatitis and have had creams of all sorts over the years but they work for a while then stop. The itching feels like it's under the skin rather than on it and it flares up every once in a while which is what leads me to think it might be stress.
I have IBS so I have no dairy, glute, red meat, caffiene, alcohol or excess sugars anyway which has helped my stomach immensely, and I work a very active job where I walk about 10 miles a day! The most aggrivating pain atm is this stabbing just above the pubic bone and I'm hoping that it's just wind or a UTI related to stress! x
Stabbing in the pubic bone is no joke, don't underestimate any kind of issue you get. UTIs can be diagnosed via urine bacterial culture. Are you sure you don't suffer from bowel endometriosis and not IBS? Also focus more on what you can eat rather than what you can't. What do you do eat? Do you eat plenty of fish and veggies, eggs, nuts, fruit, grass-fed meat once a week? [This post has been edited in line with Endometriosis UK's code of conduct]
I'll wait for your reply + PM
You might need the operation in the end to conceive obviously I can’t tell the future but I’m in pain now and I’ve said if I don’t have a successful pregnancy soon I will have no choice to seek expertise
Sorry to hear that! I had a lap 2 years ago and was told there was nothing and my uterus is 'perfectly healthy' but then when I saw a private specialist this year, was told to try sooner rather than later or it might not happen. I think I'll go back to have a lap if I can't concieve once we start trying, but I'd be crushed if I pushed for another and they found nothing!
The only thing you can do is seek a specialist I had a misscarrige and I’m sure it’s related but as it’s my first misscarrige I can’t be entirely sure I feel my situation is getting worse I have pain in my ovaries and whilst having sex I’m trying not to stress and still have sex in the hope it will move things around in my pelvic area so it’s not all stuck together but that’s what I think is happening this illness doesn’t get better internally only worse I’m sorry you didn’t get any answers after a lap I’m going to a gynaecologist next month and I’m just going to tell them straight it’s endometriosis I don’t want them convincing me it’s something else as I need treatment I already feel like things have gone far enough I can’t sit like you sometimes as well which could mean it’s gone to my bowl if I don’t get answers I want I will have to go private I can’t afford it will be my sons savings I’d have to pay back but I feel like I have no choice or I might not have another baby
You don't have to go private to get excellent care. I know many highly skilled, well-trained and experienced endometriosis excision surgeons working within the NHS. [This post has been edited in line with Endometriosis UK's code of conduct].
I have seen countless women with deep-infiltrating endometriosis or stage 4 endometriosis conceive naturally after a well-performed, complete excision surgery with a team of specialists and an experienced endo excision gyn
Hi not sure if I received a message from you before it’s the waiting time I’m worried about for treatment as I feel the longer I’m waiting on nhs the more damage and as I said I really want to preserve my fertility I’m asking my consultant about a referral to doctor ogbousci Manchester
Yes, the more you wait the worse it is but also the less skilled the consultant, the less it is. Choosing a better consultant means having more chance to save your tubes and ovaries. If you have to choose between waiting longer for a better surgeon or getting a lap sooner with an average or not so skilled surgeon, wait and get it done right the first time. I am begging you.
[This post has been edited in line with Endometriosis UK's code of conduct].
I will definitely not choose an unskilled surgeon I think you recommended doctor ogbosci to me and that is who I will ask a referral to it’s if they try tell me different I will be upset and wouldn’t know how to get this surgery on nhs if they decline the referral
Yes I’m planning to take this web page and ask for a referral through my gynaecologist I have never had a lap but I’m sure I have endo from my symptoms .I have an appointment with and also plan to take my list of symptoms with me any other advise?what if they refuse the referral where do I stand I don’t want a lap just to diagnose I’ve already had open surgery twice on my abdomen
Is he definitely still practicing on the nhs
Yes, he is good, you can trust him, but do research the doctor you choose yourself as well
I read the information you sent and it sounded good to me because he has experience in misscarrige as well so I think he can help me I hope so anyway just hope docs refer me to him because I’m not in his area but an hour and half away
Yes, I'll keep my fingers crossed. A lot of endo sisters on this forum and in other groups have to insist with their GP to get a referral so do insist you feel like he is going to make a significant difference and then we'll see
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